The Loneliness of Diabetes

| Feb 23, 2008

Until August 2006, I was a healthy 44-year-old female with no family history of diabetes. Type 1 diabetes has been so difficult, not because of the shots or management - although it is incredibly time-consuming to take care of yourself.

Diabetes is a lonely disease. People don't realize that everything affects your blood sugar. If I had cancer, all of my friends would be around caring for me, at least by asking how I am. But because I look great and exercise, am a wife, mother and president of the PTSA, attend church functions and socialize, people don't remember or know that I have a disease that affects every minute of my life.

Renée Draughon

Editor's Note: Renée's letter brings home one of the aspects of diabetes we need to talk about more: the social isolation that many people with diabetes feel. Does anyone have suggestions about what Renée might do to lessen her feelings of loneliness?

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Categories: Blood Sugar, Diabetes, Diabetes, Letters to the Editor, Type 1 Issues


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Comments

Posted by robtbraun on 23 February 2008

My story is similar to Renee's, but my subsequent experience is quite different. I was 54 when I was diagnosed with Type 1 diabetes, although I had no family history of the disease. I had also always been physically fit and active in my community, and never expected that this would become an issue in my life. Once the diagnosis was made,instead of remaining isolated,I went out and got some training, and became a patient advocate and mentor. I now meet with patient support groups and attend health fairs to share my experience in taking control of my illness. My friends and family who do not have diabetes have also become more aware of the consequences of uncontrolled diabetes,and some have even begun to take better care of themselves.Instead of feeling isolated, I feel like I'm part of a caring, supportive community. This helps me keep my outlook positive.

Posted by Anonymous on 23 February 2008

Just simply allow those that want to be a part of your life...in... be open to them and enjoy them

Posted by rainbowgoddess on 23 February 2008

There are many online communities for people with diabetes, both Type 1 and Type 2. One that I recommend is tudiabetes.com. Everyone there is very friendly and supportive, and they know exactly what you are going through.

Perhaps Renee could also look for diabetes support groups in her area. The Diabetes Association might know of one. If there are none, she might consider starting one herself.

Posted by Anonymous on 25 February 2008

I was 30 when I was diagnosed with type 1. Although there are online communities and even support groups, I think the point is that the people in your daily life (family, friends, coworkers, bosses, etc) don't understand. I do believe outside support is helpful, but if the people immediately surrounding you are clueless, you can still feel alone, while they eat and play and work without a care... and you can't.

Posted by Anonymous on 27 February 2008

I think the lonliness of diabetes exists because it changes your personality, all of a sudden you must become very self-centered. Every waking thought becomes about "your diabetes". You must plan for every moment of every day, every meal, every snack, your medication schedule. You must be aware of yourself and how you are feeling at every moment. You can no longer just 'get up and go'. You can not leave the house without brining along everything that you might need. Because of this, we feel that no one (other than fellow diabetics), knows how we feel or what we must go through every day. Maybe also, we are a little jealous of those who do not have diabetes. I don't know what the answer is either, but I have come to accept the lonliness of diabetes and maybe I will seek out a support group because I don't want to burdon family and friends with this.

Posted by Anonymous on 28 February 2008

I am an RN 17 yrs Type 1, adult onset and work in a health related office. One of my colleagues, a non nurse, asked me to test my blood sugar outside of the lunch room. It made her squeemish, she said "I know I should look away but I can't." I accommodated her by testing outside the room. It has been a long time since I was made to feel that way about my diabetes, it is the isolation you speak of. I will say though, I don't feel like a diabetic all the time, just every 2 or 3 hours. David

Posted by Anonymous on 28 February 2008

oh my God! Thank you for saying that because I've been trying to say the same thing and no one understands! I think all I can say about type I diabetes is that we have each other, even though we don't know one another. It's difficult to go through this in isolation, as you say, and it's not easy to find other type I's, esp. if you don't live in a large city or if you are a minority yourself, and need a friend of the same background! (On-line friends are good, but not the same as having a friend you really know.)

I'm actually shocked at the kinds of articles that have been published about diabetes in various magazines until recently, things like, "I'm so happy w. my healthy lifestyle. . . I eat salad and exercise!" What, like I didn't eat well and exercise BEFORE I was type I? Give me a break! Thank goodness for diabetes health which publishes real articles about real people with diabetes. Esp. yours!

Posted by Anonymous on 28 February 2008

I know it is hard living everyday with the disease. I have had type 1 since I was 19 years old that was 1987. It is not a disease like others where support is positive. People have wanted to give me a shot when my blood sugar was low. They treat you differently after coming out of a very bad insulin reaction. Luckily for me I found a diabetes doctor who knows all about the disease. No longer do I have bad reactions. Lord knows what he did but did something right. Now nobody asks me about my diabetes and I am happy. This happened as of last year. It is so nice to wake up every day and not be asked about my disease. It can be a lonely disease but do not let it control your life. That is a mistake I used to make. Just live life as long as things are going well. Do not worry about what others think or don't think. I too went through the lonely time but it is a waste of time. You are what is most important do not worry about support that is not there. Yes we have to take shots the rest of our lives but we can handle it. Do what you did now if you get lonely about your diabetes come back and tell about it. There are always people to listen and what better than another diabetic. It is a support club so to speak even if we are strangers. Live your life is all I can say don't let diabetes get you down. Have a good day today and every day and everything will be okay.

Posted by Anonymous on 28 February 2008

As a Type 1 diabetic for 45 years I've learned that any feelings of loneliness would emanate from the choice of that person himself or herself. The solution to that feeling is to involve (in a productive not an obsessive way)others around you in management of the disease. This is particularly important at work. My colleagues are active participants in helping me manage diabetes and, in particular, watching for signs of hypoglycemia (a recurrent problem for me). Colleagues will do this gladly so long as they you follow through in being recognized as a highly productive co-worker. Involve them with a smile and an appreciation for for their caring for and monitoring of you. Fortunately, I'm just starting to use a continuous glucose monitoring system -- and my officemates are sharing my excitement about this.

Posted by Anonymous on 28 February 2008

I have been diabetic for 25 years. I am now 55. Even though I am on medication for depression, this past year I am having increasing difficulty pushing myself to do the regimen required. I tried to express myself to my doctor: I am finding that I can't have a life if I don't control the diabetes; but I don't have much of a life as I control it. NO, he says, it isn't time-consuming. Well, just that week I spent over 7 hours in a pharmacy trying to convince the pharmacist to give me the correct amount of symlin (but your doctor says....) and get the right amount of syringes. The time for blood work, the three-month doctor appointments, the depression appointments, the teeth, the feet, the eyes.....and I am relatively healthy!
I'm just tired of it all. With cancer, at some point, you can say, enough is enough. I choose a few months of peace.
With diabetes you die piece by piece if you quit treatement.
All my available extra funds go to this disease--no more meals out, no new clothing, no vacations, no decent car, no new furniture, no jewelry. Yet I am far better off than a lot, and I am grateful for that.
Good luck.

Posted by Anonymous on 28 February 2008

i can relate to what Renee is saying. I have had type 1 diabetes since 1959. It gets to be a long road dealing with the stresses of diabetes day in and out. It only gets harder when you develop complications.

I use to be involved with support groups but over 15 of my diabetic friends from those days have died. I only have one diabetic friend left and she moved out of the area.

It seems type 1 is even more isolating as we get older because there are so few of us in any one area. Even doctors these days confuse me with being a type 2. I'm not overweight but for some reason they confuse my age with instanly thinking I'm a type 2. I tell them over and over. Finally I took a picture of me the summer I was diagnosed and made them put this in my chart. i always stay proactive in taking care of myself but it does get to me at times.

I'm glad you brought the topic up. The only positive I see about this is to make sure I have compassion for others with rare diseases.

Posted by Anonymous on 28 February 2008

I let the poeple who are close in my life know how important it is for themto support what ever it is I need to do.

I don't expect them to understand my treatment or to do it, but to support me in what I need to do. You have to speak up, very loud sometimes. THose closest to me know to support what I say I need. That helps.

Posted by Anonymous on 28 February 2008

YES THIS IS A TIME CONSUMING DISEASE. IT IS VERY DIFFICULT NOT TO BEABLE TO COME AND GO AS YOU DID AT ONE TIME. NOW WE HAVE TO MAKE SURE WE HAVE FOOD, DRINK OR SOMETHINK WITH US SO WE WILL BE PREPARED IF WE HAVE A LOW, OR A HIGH. IT IS ALSO DIFFICULT GOING OUT FOR MEALS, RESTRS. OR PRIVATE HOMES. BEING ON THE PUMP, I HAVE TO COUNT EVERY CARB AND PUT ALL INFORMATION INTO THE PUMP, SO I KNOW HOW MUCH INSULIN I NEED TO TAKE. THIS ALL TAKES TIME AND I HATE THE THOUGHT OF HAVING EVERYONE WAIT FOR ME. IT REALLY IS A LONELY DISEASE, AND CAN GET VERY FLUSTRATING ALONG THE WAY. WE LIVE WITH IT, BUT IT ISN'T FUN EITHER.

Posted by Anonymous on 28 February 2008

I think that the way our society deals with diabetes affects our concept of diabetes. We will often build large centers for cancer treatment. We have an often unlimited amount of money that can be spend on cancer treatment or heart disease. But, diabetes is only allowed 10 hours of education the first year and 2 hours of education thereafter (by medicare and many private insurances.) People are expected to be able to learn everything they need to control this disease and not let it control, but, in a relatively short amount of time. Also, many people believe the falsehood that diabetes is a "fat-person's disease" or if you just would not eat sweets it would go away. Support groups and diabetes educators work to change these but, is can be a long uphill battle.

Posted by Barbarah on 28 February 2008

One of the things that works for me is to consider this issue a gift from God-I know that sounds strange but He does love us and would not give us something to handle that he knew we could not, without giving us all of his wisdom to confront it!
It does not always prove to be perfect, but nothing we have to bear in this life is.
This attitude has opened many dooors that I might otherwise not even appraoch.
There are no good answers as to why some of us seem to have more negative things on our plates until we " see" that maybe we CAN find answers and our job on earth will have more meaning.

Posted by Anonymous on 28 February 2008

As a person living with Type I for 50 years I have never felt alone. I decided to NOT allow diabetes to change me and it hasn't.

My suggestion is to do what you want to do; involve yourself within the community. Make friends and if they are your friend they WILL understand; otherwise forget them!

There is only one person in charge of your life and that is YOU!

Good Luck!

Posted by Anonymous on 28 February 2008

I read this article and although I do not have adult-onset Type 1 diabetes, this year I will be observing my 50th year with a diagnosis of Type 1. It is truly a day-to-day disease and does require management of time and planning of activities. But, with doing these activities more and more each day, it does get easier and almost routine after a while. I have never felt "isolated" from friends or family, although a lot of times they don't understand what's going on with me and my diabetes -- in those cases, it only takes a few minutes to explain. And, I think that is the key to dealing with a lot of the problems of diabetes -- talking abouty it with people around you. Once they understand the situation, I've found that most people are more than willing to help me out and not shut me out. Diabetes is a difficult disease to manage, but it can be done and each of us has to expect the unexpected and know that things will happen that we sometimes don't have any control over. I test my blood and take my insulin in public places all the time -- if those around me don't like it, so what? It's a requirement to manage my disease and so I do it. Don't hide and feel alone -- this disease is shared by millions and we've all had to go through some difficult times. You will make it through this process and come out stronger (I hope)! Good luck!

Posted by Anonymous on 28 February 2008

I have had type I diabetes since I was 12, so I'm going on 27 years, and have never felt the lonliness, maybe it's because of the way I've been with my friends, joking around with them about it to make them feel at ease. I mean now when someone finds out I am one, I just say "Yep, I've been a walking pin cushion for over 25 years," I usually get a chuckle and then I never have a problem around them, because they know I'm not embarrassed about it. As for managing it in public, well I am usually courteous and if near someone will ask them if me testing my blood or taking my shot might bother them, but I also look at it as, no one ever worries about how other people need to take medication in public, there should be no difference. I've taken my shot while sitting in my seat on Airplanes, in movie theatres, and I've actually never had a strange look or comment said.

Posted by Anonymous on 28 February 2008

I've had type 1 since i was 8 and I'm 52 now. This theme of isolation is one I totally, utterly identify with. I think we desperately need to shift the background scenery. When I was a kid, I was mortified, ashamed of my diabetes. i felt it was somehow my fault, and the hospital staff reinforced that, criticising me viciously when I was admitted with another sever hypo and having had a fit (I have epilepsy as well). What was I doing? Why had I not behaved? How dare I come back into hospital? believe me, things have improved. In those days, it took 2 weeks to be told that yes, you had been hypo that morning when you went into a coma, and we had pyrex syringes with large stainless steel needles that had to be boiled! Believe, me it is getting better but Renee is right: it is isolating. Let's see if we can change that!

Posted by Anonymous on 28 February 2008

Perhaps the lonliness is depression-a screening by a mental health professional may not be a bad idea. I do not have diabetes, but both of my teenage children have Type 1. I suppose they are somewhat "lucky" since they were diagnosed as children (with no family history) and I have made effort to educate myself as well as the two of them, and they know many people with the same disease they have. I have found support groups helpful to all three of us, and my 13 year old has been in therapy for a while, he has mild depression, was recently put on Zoloft and feels "like a new man" as he says! Good luck and feel well.

Posted by Anonymous on 28 February 2008

I was diagnosed with Type 1 last year at the age of 53. No known risk factors, but there you are. . . I have diabetes with MDI of insulin after just a few months.. I live in a very remote area, several hours away from my endo. Health care here is “irregular” and the prospects of a medical emergency are frightening. Visits to my endo are difficult to schedule, take 3 days (including labs, travel time, and potential follow-ups), and are very expensive. My health insurance is tied to my job so relocation wouldn’t be easy.
I’m lucky to have a supportive partner, but do not want diabetes care to be the focus of our relationship. My partner supports my lifestyle adjustments, but does not share them. I am basically an introvert and do not often share my personal health concerns with other than very close friends. This disease has isolated me not just from others, but from my own sense of self as a strong, independent, giving person. The demands in time, energy, and resources are enormous and my life feels much too self-absorbed these days. I’m at the mercy of insurance companies who are often not merciful. Online groups are helpful to learn about others’ experiences and successes with day-to-day management, but I’m usually a “lurker”. This is my first post ever.

Posted by riva on 28 February 2008

I use to feel lonely with my type 1 diabetes because no one sees it, and of course I would make sure of that, but then two things happened. One, I got a husband who is an incredible supporter, and two, I realized everyone is lonely with their deepest issues. While people may sympathize if you have cancer, I imagine the person with cancer is still lonely. They think and feel no one else can truly understand what they are going through. Lonliness is a temporary feeling and it goes away when you stop thinking about it. Enjoy life, and then cherish when an acquaintance says totally spontaneously, "You live with your illness with such grace." Maybe we are not as invisible as we think.

Posted by Anonymous on 28 February 2008

My advice is to roll with the punches --- whether it is diabetes or anything else life throws at you. Talk to those who care enough to hear you. You know who they are. Inform them enough so that they understand your unusual behavior, if it happens, but not so much that you become a bore.
And take care of your needs --- for once in your life, you have to put yourself first. And not feel guilty about it. Like in an airplane, they tell you to put on your oxygen mask first in case of an emergency --- because how can you help anyone if you are beyond help?! So with diabetes, take care of yourself, do what you need to, snd having done that,turn your focus outward
The best is yet to be!

Posted by Anonymous on 28 February 2008

I was diagnosed in Nov. 2007, I first felt overwhelmed with this diagnosis, because I had no idea that I would be a diabetic. People don't think you are sick, because you look so good, you have no physical appearance that says you are, talking with others is fine, but when you are alone, you tend to think about the what if's. I am working on losing weight, they say that will be a big help and take it day by day

Posted by Anonymous on 28 February 2008

Most media stories are about T2 and heavily blame the victims because they call it a "lifestyle disease," and this spills over onto us (not that T2 sufferers SHOULD be blamed, probably many of them got that way trying to follow a "heart-healthy diet") and intensifies the loneliness. I feel guilty enough when I see a bad number on the meter; the last thing I need is to receive blame from random strangers and/or family members too, and "diabetes police."

The problem is worsened by the fact that we can't seem to get the authorities to agree on the best treatment, so here I am trying to do my best with my low carb way of life, and I have people left and right, including T2 relatives, telling me that what I'm doing is wrong and will surely lead to disaster.

It would be easier if all of us in the same boat were able to know that we were all doing the best we could for our health - then at least we could feel each others' support. I was embarrassed the other day at synagogue because the rabbi offered me the grape juice and I refused it -- turns out the cantor is T2 and couldn't understand why I wouldn't take fruit juice, since HE does.

Another problem - this disease is managed by the people who have it. If you develop complications, everyone will blame you and not your doctor. Most other illnesses are managed by doctors, not by patients, and most don't require thinking about nearly every waking hour of every day.

It is a *huge* mental load.

But we are out here! Yes we are. Many of us.

Posted by Anonymous on 28 February 2008

I'm a adult onset "type 1.5" diabetic. I've been living with the disease since 1992, and am now 60 years old.

In the beginning (right after diagnosis) my co-workers were somewhat put off by the knowledge that I had to "give myself shots", but I was lucky enough to have a boss and some co-workers who cared when my sugar went low, and hounded me into "eating something".

Over the years, I've made it a point to learn all I can about this disease, and also got lucky in finding a good local Endocrinolgist (not sure of the spelling).

Despite all this, my control deteriorated over the years till I was becoming unconcious at least one a month, due to a sudden severe low.

My answer was an Insulin Pump. I've been on it for about 3 years, and it's not only done away with nearly all of the unexpected lows, but it's given me the freedom to eat more of the food I like, and eat with friends on a moment's notice.

I guess what I'm trying to say is, to fight this disease, the most important thing is to educate yourself, then look at all your treatment options, talk things over with a doctor you trust, and then do all you can to control your sugar, without compromising your freedom to be yourself. Don't let the disease control you.

It also helps to tell those who are close to you about your disease, and what they can do to make life a little easier.

Posted by Anonymous on 28 February 2008

Renee -- you need to quit whinning and feeling sorry for yourself. Go live your life. Your "poor me" attitude is your biggest problem, not diabetes.

Hopefully you're doing basal/bolus therapy which, when done properly (e.g., checking bg's several times a day) allows you to lead a normal life. If not, go find an endo who knows what he's talking about. Pen or pump, you can have great control and a life just like everyone.

Do you need to get cancer and see the difference between it and type 1 diabetes? We have both at my house -- and the type 1 is as healthy as can be thanks to basal/bolus therapy and paying attention (and checking several times a day). Our cancer patient WISHES she had type one, and only had to stop every hour or so to check or deliver a bolus. Her life would be so much esaier if that's all she had to do.

Drag yourself out of your poor attitude, make sure you have a great diabetes care team, and live your life.

Posted by grammy frank on 28 February 2008

I was diagnosed type 1 diabetic 45 years ago when I was 29, a young mother, no family history of diabetes - a complete shock.
I have been sucessful - completed college and graduate work, held many busy active jobs and maintain my level of activity since retirement with lots of interesting volunteer jobs.
It was not just the loneliness of taking care of the disease, it was the lack of good medical advice. My present Endo treats me like a science experiment - always looking for test logs so that we can change some little thing. Well that is no help when I have one of those mystery days when I run high sugars for no known reason.
Diabetes is the disease of negative feedback. Your sugars are too high or you have too many hypos, or you are too fat or you must not not be exercising ehough.
I really want us all to have bumper stickers for us all that say "It Is NOT My Fault"

Posted by Emma on 28 February 2008

Just be aware that your blood sugar affects your mood and how you deal with people. I really noticed the difference in how I deal with people depending on my blood sugar. If you are too high, you become lethagic; if too low, you get all confused and bumbling. That's probably the hardest for people to understand, and the only way to "combat" it is to be aware of it. Otherwise, you will feel that no one understands (and why should they really - they cannot see the sugar in your blood) and you will feel more and more isolated.

I also try and maintain a sense of humour about it although type 1 is no laughing matter, but it will mean having an easier time dealing with and accepting it.

Posted by Anonymous on 28 February 2008

I am so grateful for all of these comments. I've been experiencing burnout for the last few months (actually, denial would be the better word for it), and I'm just now taking the baby steps required to get out of it. Your comments are very helpful.

Posted by jools on 29 February 2008

to all diabetics out there. the one thing that every body is still missing is that we all are still here because we have insulin. we can do the same as any body else can in moderation and carefull planing. i have been a diabetic for 40 1/2 years since i was 9 1/2 years old. i have tried every thing going for diabetics. i have heard umpting times how they have found a cure and then find out it will be here in 5 or 10 years time. the only person who knows you better is your self. i could write a book on how i should be treated. cause only i know how i work. if a so called docter says to me this is how we should treat you, i say no leave me i am a diabetic that nobody knows how to treat cause i am not your usual diabetic. i have tests done and never get told the results by phone unles i ring up. if i can not get a returned message i then wait till my next appointment to be told [you should have started you new meds] da da . my life has not been the best, but i will keep going till the day i die. then and only then will i be remembered for being a very sick diabetic who just kept on going and going. as a doctor once said you are so welled pickled on the out side, but falling apart on the inside and no body would of known. well good on you jools for being such a great diabetic. just be greatful that you are all still here and breathing the fresh air.x

Posted by Anonymous on 29 February 2008

I got Type 1 diabetes when I was 22 years old, 30 years ago this month. I can remember telling myself that I wanted to feel as normal as possible, regardless of my disease. I think you must try to feel positive even when lifes journey is difficult. When I am down I can get in a rut, but I tell myself, this is my life and I am going to make it the best I can and pick myself up again...
I try to fill myself with knowledge about my disease and I have learned to recognize the way I feel and what it means when I have highs and lows and how to react to them.
I also think it is important to see your diabetes educator and endocrine doctor regularly. I see them alternately every 3 months and have developed a good relatonship with both.
I also try to maintain a sense of humor. Laughter is great medicine.

Posted by Anonymous on 29 February 2008

Renee has a very full life, with lots of friends, loneliness should not be a problem. It may be more a problem of openness; contradictory feelings of wanting to share other aspects of her life and yet wanting to keep quiet, not ready to admit, fearing an ancient stigma, not knowing how to introduce the topic without being viewed as whining about po' lil' me.
But with deeper diabetes education, and some networking with other diabetics, I think she has a wonderful opportunity to share knowledge with her network of friends outside of the diabetes community. And in the process, she'll be amazed at how many of those people are impacted by it, directly or indirectly...

Posted by Anonymous on 29 February 2008

Diabetes is a depressing disease, no doubt. I often feel it is not recognized for what it is but instead, to many, it's a disease where you can't eat sugars and take insulin to control things and that's that. So underrated and less validated. It's a daily grind of checks and balances and doesn't leave your mind for long remembering to eat, test, treat, etc. Recently I was diagnosed with celiac disease which runs close in hand to diabetes. Another controlling and limiting factor ... oh no, my plate is full! However, with the grace of God and a wonderful husband and children, along with friends, I still feel blessed and lucky to have treatments and medical personnel to support me. It's been 31 years since my age 17 diagnosis and I have no damage, hold a good job, and keep a positive spirit remembering to eat right, exercise and celebrate every day of life. Sounds corney but it's true .... try to keep on track and not let this disease control any more than management. One laugh my husband and I share .... ever meet someone that says after learning you have diabetes that a relative of theirs has diabetes but is doing really good after their leg amputation. It's a one on one self management which feels lonely and unfair, so true. But remember to take it one day at a time and move forward.

Posted by Anonymous on 29 February 2008

We have a diabetes support group that meets once a week and it is very helpful to all. I've been type 2 since 99' and throuhg having this, I have been able to help others with the same situations.

Posted by Anonymous on 1 March 2008

There's no question type 1 diabetes is no fun, but I feel you have to keep a positve attitude. Just be thankful it isn't cancer. I've had type 1 for 14 years now and I'm 58 and when I was diagnosed I was afraid that maybe it was something like cancer because I din't understand how diabetes affected the body in so many ways. I have been a pump user for 2 years now and would recomend it to any who is having trouble with control

Posted by chickadee410 on 1 March 2008

Thank you so much for this article. I thought I was the only one that felt this way. My lonliness is from my family. One sister does not like me to check my BG in front of my 11 yr old niece. My other sister gets mad when I am not upbeat 24 hrs a day. I have had Type 1 for 40 yrs with multiple complications. I struggle every minute of every day with my diabetes/complications. My family has never given me any support even though they know all of my health problems. If you look normal on the outside, people think nothing is wrong with your health.

Posted by Anonymous on 1 March 2008

Never forget the age old saying: "For Only By the Grace of God Go I". Life is what happens when you see it happen to others? No; Life is what happens to you everyday. I've been Type2 since the 80's. Now in my mid 50's my A1C is passing just over 7 which is the red flag range for starting insulin. I plan to deal with that and go on living by the "Grace of God" because that's all any of us have. Be "Thankfull" and Keep "Smiling"!

Posted by Anonymous on 2 March 2008

I have had type 1 since the age of 22. I am 49 years old now. It has not been an easy road and sometimes I feel sorry for myself.
What I try to do each day is think of what other people are going through as far as the different diseases that are out there and their suffering on a day to day basis. Type one is not fun, however, I also feel blessed because I feel God has given me a disease that is controlable and someday I hope it will be cureable. I have two children and also thank God everyday that they are heathy so far (they are 20 and 21). I am working on trying to find out how I can become a patient advocate. Take control and don't let it take control of you is something I am trying to live my life by now. Best of luck.

Posted by Anonymous on 3 March 2008

Reneé,
I can't understand what your problenm is. From the sound of things you seem to have your diabetes under control. What do you want, exactly? A higher ranking killer disease, so as to get more sympathy? A medal for surviving Diabetes? Hell!!! Let life be your medal.! If you're lonely, join a club! Do what you have to do. I am just starting to use insuline and I am just too glad for the chance at life. Come on. Complain about something worthwhile and screw those who don't understand your needs.

Posted by Anonymous on 3 March 2008

Be brave,be positive but above all else be grateful. We only appreciate the good when we have had the bad & things could be so much worse. Look around you. Keep smiling and keep 'jabbing'even if you do look like an old dartboard. Ha Ha !!!

Posted by Anonymous on 8 March 2008

wow, there sure are a lot of people who posted comments to this article!!!!
I have had type 1 since I was 18.
At that time, NObody really had a clue how to approach it.
The best advice from our doc's was "if you stay on A diet, wee wee on your yellow test strips, and take your recommended shot of NPH, you'll be fine"
NOT!!
Over the years, things have dramatically changed.
The lonliness, however, remains. When we struggle with anything in life that We are primarily responsible for, I think we have an empty feeling sometimes.
We ALL have our demons in life. Sometimes they get the best of us, and sometimes they don't.
I understand that there is a place called Heaven, where we will "weep no more"
I sure hope there is and I hope I make it when this journey is over. !!!!!!!!!!!!!!

Posted by Anonymous on 8 March 2008

Have been a type 1 since 1968,am 51 years old now and continue to try to always control my diabetes, to the best of my ability. I agree that this disease is lonely at times, but it also has opened many opportunitues for me. I continue to learn something new about this unkind disease daily and see many good/poor outcomes working as an RN in geriatrics and also at a diabetic camp for children every year. Have lived though the changes of treatment of one shot a day in a glass syringe, urine tests and a lab measure of a blood sugar once every 3 months to now an insulin pump, and CGMS for better outcomes. Yes, I get frustrated at times with all the doctors I am to see on a routine basis just for routine diabetes care standards. And the cost!!!! Am going though menapause now with many tropical storms which I can not tell if it may be a low sugar or a power surge especially during the night. Am kind of down in the dumps more about this and have more blood sugar fluctuations inspite of following & doing all the recommendations. Hormones are not fun! I sometimes feel like I'm falling apart, too. That's OK for a short time, but then I visit my support system.
I have a husband who has type 2 diabetes and other friends/family who listen to me. They help me in times of need.
With the diabetes epidemic I have been in groups where the diabetics outnumber the nondiabetics recently. I know that there are people who are better off than me and those with problems worse than mine. I pat myself on the back that I can do something to change the future for myself or others positively (hopefully not negatively). I allow myself to do something once a week (treat day) that may make my sugar go high and then I do something to correct it right away. I laugh and don't kick myself if something goes crazy, but try to make changes so that it will not happen again. Humor helps me cope. I try to think of 2 positives for every negative that happens. Have talked to some diabetes educators who have become diabetic also and say that- wow, I use to give all these instructions to my patients, but putting them into practice is "SO HARD". Remember no one is perfect. Life is a journey, enjoy the ride!

Posted by Pro-Humanist FREELOVER on 9 March 2008

I've been type 1 since the age of 5, for going on 47 years and counting. Treatment, initially, was 2 shots per day, NPH and Regular. Now? 2 shots per day, NPH and Regular.

Blood Sugar Tests at the time I got the disease? A visit to the Doctor, as the only test available at home was urine testing, not helpful and at
the time, I didn't view it in a positive light. Now? Same view, unchanged despite the diabetic community, by and large, promoting the stick-test motif to 'manage' the disease, as if.

Needless to say, I've got psychological issues with having the disease that I've yet to 'fix'. I battled depression my whole life, 'til a couple of years ago, borderline suicidal mostly as a long-term impact of a most unwelcome divorce, but also as a result of having chronic depression since the age of 8, as best I can recall. I happened to get lucky, and found a doctor that prescribed the 'right' drugs for me. Fixed the suicidal depression, and I've been off that for quite some time.

The depression didn't recur in that persistent unrelenting unable to be 'cured' way, -but- one of the side effects of the medication was a long-lasting hypoglycemic unawareness -and- a propensity to have low blood sugars at work, at home, on the road (yikes, but fortunately, the two times that happened in the last two years, no wrecks, though many years ago, I had an insulin reaction and flipped my convertible Mustang 6 times -- my daughter was in the back seat, protected by a roll bar I purchased for that very purpose, but my ex-wife ...

... well, needless to say, whatever chance I had to spend sufficient time with my daughter, it was lost then and there, when she was 10, about 5 months after I was fired by my ex-friend, probably due in no small part to my having an insulin reaction in his new truck).

That hypoglycemic-unawareness lasted for many months -after- going off the meds. That seems to have passed, recently, so now I'm back to being more worried about highs than lows, though lows, as type 1s well know, are always a risk for those on injections.

However, I found out, from a comment from a parent of a type 1 at work, that being on an insulin pump, her child has a much greater risk of highs. Oh well, can't win for losing with this damnable disease.

On a bright note, research into a cure is out there, but as most type 1s will tell you, it's been a long time coming and many (most?) are losing hope in that regard.

I found this group by searching for info on Brett Michaels (ex-lead singer for the rock band Poison). Funny thing, I was a big Poison fan from their start, -but- had no idea that Brett was type 1 'til, I dunno, a few years ago.

By the way, not a believer in a deity am I, so I differ with type 1s who've expressed belief in / support for same in their responses.

Loneliness? Well, alone with this disease, but also alone from the standpoint of having a personality type of a loner, something I've not been able to overcome, something that may be just who I am. That feeling of powerlessness, helplessness, anxiety about having such a f***** up disease, that's my state of mind.

OK, not healthy, that, but I just seem trapped by this disease, no matter how much/many like to convey that it's merely a hardship that, with the 'right' amount of effort, one can ... how should one characterize their optimism ... oh well, I'll let the optimists take care of that, as my life experience has been far removed from theirs.

The cure? I still hope for it, and all I can tell you is that for some, like me, this disease is a living hell, a constant unrelenting nightmare, from which the only escape is a bonafide genuine cure (as this disease and the manner in which the burden for its maintenance falls overwhelmingly on the individual, requires 24X7X365, 366 every leap year, guarding against and dealing with lows/car wrecks/accidents, guarding against and dealing with highs/potential comas, trying to prevent heart attacks, strokes, impotence, blindness, kidney failure, and other such delights).

Sorry for the downside look, just trying to be honest in differing with the overly (in my view) optimistic views of those who submit that there is not a very high cost (emotionally, socially, psychologically, financially, health-wise) of dealing with type 1 diabetes (for whatever length, and of note, I just read about a type 1 who got the disease at age 11, in 1937, and lived to be 81, a very long life, most of which was lived in a day and age prior to finger-pricking your way to happiness[?]).

Best of luck.

Posted by Anonymous on 9 March 2008

Hi, Renée.

I salute you for writing your letter. As I'm sure you can see from the large number of responses, this is a topic that hits close to home for so many of us living with type 1. Or type 2.

Your feelings are real and true (and whoever called you whiney should go take a reading on his or her compassion meter--I suspect you're having a low). Thanks for sharing and letting us all experience a little therapy.

And now, for a top ten list.

Top Ten Reasons People with Diabetes are Cooler Than Your Average Person.
1) We are a family. Thanks to the guy on the neighboring bench in Estes Park, Colorado, who saw me testing my blood sugar during a big low and said, pointing to his young daughter and himself, "We're diabetic, too!" It feels good to know others are out there.
2) We can gross out squeamish people. I have no sympathy for those who don't like to watch me test my blood sugar. Too bad for you. Just be grateful you don't have to do it. It's easier for you to turn your head or close your eyes than it is for me to manage my blood sugar, so my needs trump yours.
3) We know a lot about nutrition. Not that we always make the best choices, but we sure know a lot about what's good for fueling our bodies.
4) We know what's important. Even with excellent self-care and a good medical team, the specter of complications looms. So maybe this makes each moment we enjoy a little more special.
5) We understand not being perfect. I don't know about you, but I'd never park in a handicap parking spot if I didn't need one. Ever.
6) We have the power. With other diseases, the doctor decides treatment. With this disease, treatment is in our hands.
7) We are strong. A regimen of constant blood sugar checks, careful selection of food, battles with insurance, etc., etc., stengthens character.
8) We have a sense of humor. Most days.
9) We want to help others. I've never met a selfish diabetic.
10) We are so much more than our disease. Wife, mother, daughter, friend, editor, type 1. I'm proud to be me, whether I'm happy with my latest A1C result or not.

Posted by sugarbaby on 14 March 2008

I feel the topic cn be interpreted into many things. I take care of diabetics all day. I also have a father, brother, sister, and neice with type 1 diabetes. You can say it doesn't skip a generation in our family. However, I DID want to comment that, I have chronic back problems and I control it with still after 5 years only entry level pain meds because I have to function and constantly measure insulin. I feel very much the same way. Isolated because ppl think since I look okay then I must be. It's very difficult to function some days and those days I remain isolated. You're right if I had a very noticeable problem I would get treated with more sympathy. I cant just go around saying Hi, Im 30 something and have osteoporosis, and disk arthritis. Doesn't usually fly. So you are not alone!!!

Posted by Anonymous on 15 March 2008

This article sums it up perfectly. What an alienating disease we have and it is hard for people to understand. People have no idea that you have to think about it every minute of the day because it is not visible to them. I was told one day by my husband that I need to check my blood sugar somewhere else besides at the dinner table (when eating out), because people don't want to see that. I was mortified when he said that to me. I do hide it on my lap and do not make a big to do about it. I feel like I am looked at differently and it really sucks!!

Posted by Anonymous on 16 March 2008

My son was 12 when he developed Type 1 - no family history - out of the blue - total shock - lucky for us we were able to get him to a wonderful children's hospital for treatment. While there, (5 days) we concluded after seeing all the other illness he could have this was one he could continue to have a ‘life’. That is how we have always approached this; Thank God, he only has to deal with diabetes. I truly believe outlook helps with any long term illness. I hope we do not change.

Posted by Anonymous on 16 March 2008

I've had type 1 diabetes since I was 14 yrs. old, and now I'm 63, and fortunate to still be here. It has definitely been a trial in my life; there have been times when I've been embarrassed about it, and one day, while working as an RN, when I was taking my blood sugar test and insulin before a meal, one of my co workers (an office worker) just kind of shuddered and said "ewwwwwwwwweee!!" My boss, who was a nurse like I was, told me in a rather harsh voice to go into the bathroom to do "that" there! I had always been down on myself and very angry about having the disease to begin with, and that just made it worse in embarrassing me to tears. That was a number of years ago, and I'd like to think I've grown a bit since then. I still get very frustrated about having type 1, but now I have a heavenly Friend who gives me a lot of comfort, and who helps me have the patience to live with it. My family and friends are also supportive of me. With my husband's encouragement, now I take my blood sugar discretely in restaurants, airplanes, or wherever I am. I feel that if people happen to see me performing my tests and programming my pump, then they can look the other way if it upsets them. If someone would tell me that they can't stop looking, I would probably try to say in a sympathic tone, "Oh, I'm so sorry to hear that your neck is paralyzed and you can't turn your head away or close your eyes!" The excuse about not being able to turn away just doesn't get it with me.
I too am longing for a real cure for diabetes, especially type 1. No amount of weight we lose and no amount of watching our diet is going to heal type 1, because our islet cells that produce insulin have been killed off. However, I have heard that with a very healthful diet and close medical supervision, some type 1's can get their islet cells functioning again. I don't know, as I haven't seen it for myself.

Posted by mgordon on 18 March 2008

When people ask,"Why are you ignoring me, or not answering?" I reply, "I can't afford to allow your irrational behavior to upset my diabetes." Then they realize that their behavior is affecting my diabetes." I have become Miss Smart Mouth, because I don't deal with people's foolishness. If the Heat affects my blood sugar, I inform friend by saying, "I can't go out because it's too hot and the heat affects my blood sugar." Sometimes you have to let people know without allowing them to feel sorry for you, but to make accomodations." If they can't deal with it, well hey what can you do?" Don't be afraid to let others know what's on your mind.

Posted by Anonymous on 20 March 2008

If you passed my family in the street you'd look at us all and think how lucky we are to be so healthy and free from health worries. Wrong.
My husband had severe chronic asthma (with the accompanying migraines, eczema, rhinitis etc) now well controlled with medication and diet. My daughter has severe allergies, chronic hives, brain fog, muscle weakness, eye,lip, throat and feet swelling etc etc etc, now well controlled with medication and a draconian diet. My son has severe ADHD, again helped with diet (they all have different diets mind you), my other daughter has all of these problems to a lesser extent and won't accept a diet, and me, well, I don't have any allergies, just type 2 looming. But I have had a dozen operations for various problems, and there have been months where I look so happy in the sunshine, but my insides are screaming 'I want to die'.

My point is, not everything is always as rosy as it seems for others. I had to learn how to deal with problems much earlier than others, and in the end, these problems made me who I am today, and I like who I am.

You learn things like, 'you get used to anything', how to manage stress, how to keep going, how to be grateful for what you do have. And all that stuff is really useful in creating a happy life.

Your friends will catch up as well, they'll get health problems too, probably in their 50's, and you'll be the one that really understands and can help, as well as being well equiped to handle whatever else comes your way.

Life really is like a game of cards. You have to play with the hand you are dealt. And because you are still out there exercising and socialising, sounds to me like you are doing very well and should give yourself a really big pat on the back.

Posted by Anonymous on 26 March 2008

I have type 2 and am harrassed every time I miss a day at work by my bosses and coworkers I even have people keeping track of my days off and a boss who calls me a clutts when every anything goes wrong ask me if I'm lost when I have to go to the bathroom people say fire her cause of reactions to different meds. when I started insulim I lost my sight for a couple days still don't know why dr's just can't seem to figure me out I am a mess inside sometimes I wonder why I got this and no one else in my family has it. I'm begining to want to just die on days hoping to just end it all I am so depressed over my bosses and the talk at work cause noone understands how my body really feels

Posted by AnnetteUK on 31 May 2008

51 years ago when diagnosed, my parents were told I had 1 day to live... but miraculously I survived..I was grateful and left with the spirit to survive.. thinking 'if there was ever anything I wanted to do in life I better hurry up and do it :)' even when told I could live perhaps 20 even 25 years..I decided to enjoy each and every minute, day, week, month and year .. and I still do. It has been quite an adventure.. a thrilling ride.. from archaic treatments to BG meters, pumps, many different types of insulin. So many choices!! I decided to not let Juvenile Diabetes control my life but for me to control every aspect of it!! I emigrated to the USA alone right after my 21st birthday.. and against doctors orders I married .. and God forbid.. got preggers [had 2 healthy daughters] travel ocross the Atlantic, mainly alone, twice a year.. and all over the USA.. having the kind of holidays undiabetic people do. My number 1 free non-toxic God given medicine has been a super sense of humour.. and ..pride.
I have been told I will be part of the Joslin study of those that have had Type1 for 50 years including many that have no DM related complications. They say there are only 500 to 600 of us in the USA. So... proud yes .. and chuckling about it.

May God bless you as He has blessed me :)

Posted by Anonymous on 1 June 2008

I am a very proud person. I am 25 years old and have had DiabetesT1 for almost 10 years. When I was a teenager (lots of mood swings, selfishness and desire to be the center of everybody's attention, as everybody knows) I used to catch attention by injecting in public or spilling out my diabetic condition to strangers I'd just met.
I know what Ms Draughon means when she says that it's much different when you tell people around you that you have breast cancer than when you tell them you have Diabetes. Probably it's because of people's misconceptions about these 2 diseases (and in general, too, you never know until it happens to you, right?). Both are life-striking for sure, but from first-hand experience, there are nuisances concerning diabetes that people will ever imagine until the day they are diagnosed (and they will probably never be, though).
Now, I prefer to keep my T1D to myself (or tell someone when it's necessary) because I want people to treat me for who I am. I think it's because I am a very proud person. Just because I have diabetes doesn't mean you have to treat me with the same pity as a stray puppy!!

The bottom line? I believe it's a matter of self-esteem rather than Diabetes, apnea, high cholesterol, hipertension, you name it.

Look the bright side Ms Draughon!, something I've learned from Diabetes is not to take anything for granted anymore. And that's the reason why all the unhappy people in the world can't smile, they don't appreciate what they have until they lose it.

cc.

Posted by Anonymous on 10 June 2008

I have had diabetes since I was one years old, and am now 20.

When I was younger I had no problem and even felt proud I knew so much more about being healthy and had routines then most adults did, but while growing up even seeing the few people made me feel out of place.

Or when friends go "ooh let's get pizza!" and I couldn't have any at that time, so they would eat it and I would have to wait.. but thats life.

Since growing up with it, its a part of my life, so I shall deal with it.. Life is mysterious and at times yes I still feel down that I have diabetes, but it is managaeable so I am glad I have it instead of something that isn't.

Just roll with the punches like a lot of you are saying :)

Posted by Anonymous on 18 June 2008

I am a type 1 who has had diabetes for 12 years, since age 8. I've been through adolescence and relationships with diabetes and I know how lonesome it can feel. Diabetes really takes it's toll on moods and mood swings. I feel terrible for some of the things I've said when Hi or Low! It definatly puts a damper on dating, when your significant other worries over your health constantly!

Posted by Anonymous on 23 June 2008

In the likeness of the words of Linda Ronstadt ..."if were to take a good

look at my face, you'd see my SMILE..looks out of place, and if you'd

really look close and pay attention to the real me, you'd see the tracks

of my tears!" ... no matter how positive an ATTITUDE we have about our

lives with diabetes, no matter how gratefull we are for the parts of our

lives we do have that are great and good, no matter how wide our smiles

and trying to portray an outwardly nonchalance about this life we

lead..because that is all we can do and must do in order to survive,

thrive and remain afloat....you can pretend all you want and live in a

'happy bubble' but you can't ignore the truth and it should not be

downplayed that diabetes is a serious disease, as having ANY disease is

equally serious!..., is challenging, burdening and isolating to the people

who live and deal with it physically and emotionally. something which

cannot be said wholeheartedly for someone who does not have such HEALTH

challenges and is completely healthy. you can put off negative feelings by

substituting them with positive ones, but that doesn't mean that they are

not there. they will always be there. sweeping our emotions under the rug

does not dispell them. it only makes a huge pile of dirt in the longrun

that you will eventually trip on -especially if you try to ignore that its

there! Thankyou for voicing this very real side of living with a chronic

illness. for those who have a hard time understanding the meaning of this

type of loneliness, go climb up a tree in a deserted area handcuff

yourself to a branch, have a forgetfull friend leave with the key and you

stay and live there for a month without ever coming down and try not to

fall out.
having been diagnosed with Type 1 in 1999 at the age of 18, i've lived

through this isolation. it is a certain stage of the road of disease that

needs be addressed, for without, can lead to depression and result in lack

of attentive self care and overall disassociation to the true joys of

life. we humans are sentient beings. we need to know and be around people

who talk, act think and feel like us in the way we feel. it is the

essential connection required for us to prosper and flourish in our every

endeavours.
Only after having made connections with other diabetics, some 8 years

after my diagnosis and begining to share and learn with them comparative

health strategies did my enthusiasm for self care begin to take flight.. all

because of knowing that there was someone there to lean on who had first

hand experience with the same things i faced on a daily basis in my life.

It is no life to lead in the face of loneliness and and not having anyone

to share it closely with; .. unfortunately, that happens to require for

other persons to also have diabetes.. an affliction i would never wish on

anyone!

I view my life as being as full of blessings as any, i try to soar as best I can over any challenge, i welcome, accept and appreciate my challenges for making me a stronger person.... However, it still does not mean that having diabetes, overall.. doesn't in itself SUCK!!!!!! Glitter and Glam, does not brighten a Scam. , though you can become a great con artist!

Posted by Anonymous on 28 June 2008

Our son was diagnosed with Type 1 diabetes at the age of 11. He never complained, accepted his treatment program and was faithful to it. He was the only person in his family or friends who needed to deal with a chronic disease. One year ago, at the age of 23, he took his own life. We see now from his writings and from listening to his friends that he had issues with depression, but as parents of a diabetic child, we were never warned to look for depression as a possible side-effect of diabetes. We now see that this was a serious oversight by the medical community, and we also take responsibility for not doing our own research to be more aware of what it must be like--how lonely and depressing--to deal with a disease that is serious and yet no one realizes it because you "look" healthy. The fact was that our son was diagnosed with high blood pressure and put on medication for that as well at the age of 22. Again, we look back and say to ourselves--how must it feel to deal with a disease that is slowly harming your body? I would guess that the majority of responses on this website are from women. I think it is important for us to remember that young men, in particular, are not inclined to search for support groups, express how they are feeling, and in our son's case, remain hopeful about a healthy future. He wanted to be self-reliant and not be a burden to anyone, but we believe that his disease had taken a toll on him, as we know that he worried about getting a job where he could receive, or at least afford medical insurance that would protect him from financial struggles. We only wish we could have been more empathetic and helpful to him. True empathy is a powerful thing, and that is the hope we now try to pass on to other families so they might avoid a similar tragedy. A young person with diabetes can have a whole range of hidden emotions and appear to be coping when they are not. One of the slogans for mental health awareness and suicide prevention is, "Out of the Darkness". We wish we would have known that this could happen to ANYONE--including our beloved son.

Posted by Anonymous on 10 July 2008

I have had diabetes since the age of twelve at the beginning the truth is I found it really easy. As the time went on I found it harder to deal with. I remeber in grade seven eating my lunch with my friends, they would all be done before me and tell me just to save the rest of my lunch.I told them that I had to eat the rest of it or my blood sugar would get low,all but one friend waited for me. I found it insensative of them to not understand. Also people without diabetes they don't know how frightening it can be when your blood suger goes really low or you give your self the wrong type type of insulin and be rushed to the emergency room like myself seven months after diagnosis.The diet at the beginning was a hard because i had to really cut down on sweets which I love and the time of when i east.Now with diabetes i alao have celiac disease and that makes my diet even harder since im not allowed to eat any gluten.

Posted by peacelovelindsey on 10 July 2008

i am with u diabetes is a very lonely disease...my husband has type two i have type one even with him around every day going through "similar" things i feel all alone. i have friends and two lovely sons but i feel so isolated and misunderstood by my diabetes

Posted by Anonymous on 11 July 2008

I have Type 2 diabetes, and I know my version is a lot different than Type 1. For example, my A1C is in the 5.7-6.0 range and I'm on metformin and not insulin. I also don't have to totally shut myself off from certain types of food like Type 1 patients, so when I'm in a social situation I don't feel like I'm being a downer with everybody when it comes to the meal.

Still, I have several friends with Type 1 who rely on insulin shots or pumps to get through the day and they have definite "No's" in their diets. I see how they can be made to feel lonely.

I can empathize with people who have been told to hide their jabbing because others are squeamish. Sometimes there's no available place for a discreet glucose check. In some ways, I liked seeing prominent athletes such as NBA player Adam Morrison or Olympic swimmer Gary Hall Jr. testing themselves on the sidelines, because I think it provides exposure to the disease and gives people a better understanding of what's going on.

That said, I think there could be better accommodations for people with diabetes in public places. I don't know how many times I've gotten off a flight and stopped by the airport bathroom to test myself, only to find no clean counter space to set down my kit. I've also been to all-day conferences at major hotels and the restrooms had no place to drop off sharps after I tested myself.

Posted by Anonymous on 15 July 2008

I was diagnosed with Type II diabetes on May 28, 1998. One week before my college graduation. Lets just say I did not take the news very well even though there is a history of diabetes on both sides of my family.

For many years afterwards I admit I became an angry and bitter person as a result of the disease. I felt my life was over and for many years I hated may father because of it and even attempted suicide because living with the disease was too unbearable for me.

I became reckless and did not care about anything. My philosphy was this disease is going to destroy me I might as well enjoy life and have fun. I never told my friends and even certain members of family dont even know.

I wont bore you with all my details but for many years I was in denial and refuse to accept the fact I had diabetes. Like some of you I felt lonely and depressed and probably why I could'nt hold a relationship. It wasn't until this year that I accepted the fact that I am a diabetic alhtough the anger still rages within me. I am currently working through this.

I changed my diet and excersise more often because I am determined now to fight this disease by any means necessary.

I write this because with any disease you might through mental trauma. So for those diabetics if you need help, talk to someone or join a support group or reven seek counseling.

You will be you did.

Posted by Anonymous on 18 July 2008

I am not diabetic, however my son was diagnosed in July 2007. Right after high-school graduation. 5 days in the hospital, 2 in ICU. We talk about it a lot, sometimes I just talk and he sits and listens. I've told him that I wish it were me and not him but that he just needs to keep going and doing the best he can at taking care of himself. I share things I've learned that I know will help. I know he is still in denial somewhat, I can tell. Sometimes it's hard, many times he gets angry, resentful. So normal, I know. He has a right to be angry, but then I encourage him to try to let it go and take care of business. The comments of encouragement by others experiencing the same things helps so much. Even just knowing that others are dealing with the same things as he is really helps. Life is not always fair, but I know it has made him a better person in that he has more compassion for others.
Many people are not educated about diabetes. I sure wasn't until now. Now, what I do is take the time and educate others, and when I do know of someone who has Type 1 diabetes or meet someone with it I tell my son so he doesn't feel that he is the only one.
I encouraged him in the beginning to tell his friends. They have been a tremendous encouragemen to him and they also keep an eye on him which gives me some relief from worrying about him which I do alot of these days. When he started working shortly after his diagnosis, everyone at work watched him test his blood and some even tested theirs so they could understand more of what he had to deal with. There are alot of good people out there who can be a tremendous support to you. Tap into them. Some may not understand, but tomorrow it could be them with diabetes. It is an uphill battle but also one that we as a family are prepared to help him fight.

Posted by Anonymous on 28 July 2008

I am a type 1 diabetic myself and sympathise with your feelings of loneliness. I've often thought public misinformation and media scare-mongering leads to a diabetic feeling a sense of shame and culpability. No one wants to admit they have a condition that it seems most of the rest of the world assumes you developed because of a lack of self control or because you eat too much cake.
It may be harder, the older you develop the condition, to adjust to a lifestyle that includes it when you have so many memories of your life without it.

But, personally, I like to think of it this way: the human race at the very least needs to eat, drink and sleep, to survive. And so we additionally need to control our blood glucose to survive. If the whole world were doing it, we would think of it as just another daily chore (alternatively they would have created artificial pancreases by now or cured the damn thing!). But the fact is, while diabetes can be lonely and it can be a big strain socially, emotionally, financially, in terms of basic time management, it doesn't take away our immediate right to keep on living in the way that a serious cancer would. One of the hardest things in the world is to keep perspective. Do not think of diabetes as a slow death, because everyone in the world is dying, just try to do the best with what you have been given. Do not be discouraged at the occasional high or low, do not worry if a doctor says your Hba1c should be a point or two lower, Just try to find a balance in your life that includes your diabetes. Because diabetes is just another part of your life. A big part, but it is not a death sentence.

Posted by Anonymous on 10 August 2008

I completely understand what it's like to feel isolated because of this disease. I was diagnosed with it when I was about 6 and am now 16. It's hard especially in school when you're the only one with this disease. People don't seem to understand what it's like. Just because I don't show high or low blood sugar sysmptoms at school, some people see nothing wrong with having diabetes. One person has even said to me that I was lucky to have diabetes and they wished they had it because I was able to leave school early because I had extremely high blood sugar that day. Some people just don't seem to understand how each day you must always be on top of your illness and how it can be a struggle at times. I constantly have to carry all of my medical supplies and juices in case I get low. It can be a struggle at times, but it can be taken care of and you can enjoy your life.

Posted by shosty on 18 November 2008

People's lack of knowledge about type 1, and the confusion with type 2, is the main source of loneliness, for us, I think.

People, including family members, seem to think the care required for type 1 is excessive, because they are thinking of their Uncle Harry, who has type 2 and watches his diet and exercise, and maybe takes a pill. The vigilance needed with type 1 is not at all understood.


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