Flowers and Cards and Faux Pas... Oh My!

(Supporting the Newly Diagnosed)

| Apr 5, 2010

When I was first diagnosed with type 1 diabetes, someone said brightly to me, "Well, at least you don't have cancer!" Others told me with naïve confidence, "You can beat this thing!"  Another person remarked to my mother, "If anyone could do a good job with diabetes, it's Rachel!  I'm too scared of needles."  Not one of these comments, nor about ninety percent of the others I received, was helpful, encouraging, or beneficial. 

While in the hospital for five days following my diagnosis, I received dozens of get well cards.  Though their landscaped illustrations and well wishes were meant to encourage me, they did the exact opposite. I knew I wouldn't ever "get well" from diabetes. My disease has no cure. In fact, the brochures told me that if I weren't a perfect patient, I could expect to face the potential of blindness, limb amputation, heart problems, kidney failure, depression, sexual dysfunction, and much more. It wasn't as if I had had my tonsils removed and would spend a few days eating popsicles and watching movies before I would quickly recover and rejoin the real world.   

Flowers were even worse.  First, I'm allergic.  Second, flowers are for funerals in my opinion.   Third, they were a reminder of the world outside my hospital window that was carrying on as if nothing were wrong, while I lay hooked up to monitors and IVs, thinking about what the rest of my life looked like. 

I realize that I was very angry at the time, and I believe that my well-wishers had good intentions. Most people just don't know what to do when a diagnosis occurs, so they often default to a card, a bouquet of lilies, or an offhand comment. 

I believe that it's important to reflect on our diabetes journey and discover the lessons that were laid out for us after we were diagnosed.  This concept has been on my mind a lot lately for one reason:  Several people I know are facing a diagnosis.  And I'm trying to figure out what the heck to do for them.

For example, a fellow adoptive mother of my acquaintance recently found out that her breast cancer has returned.   On her Facebook page is a slew of messages, many of which say, "Let us know what we can do" followed by a smiley face.  I find this type of message incredibly unhelpful.  It's as if to say, "I don't really know what to do or say, and, in fact, I don't have time for you, but if I pretend to offer to be there, perhaps that will suffice."  Instead, why aren't these people offering to babysit her son, bring pizza over, or escort her to a doctor's appointment?  

When I arrived home from the hospital, I needed supervision and guidance.  I was weak, exhausted, and mentally foggy.   My mother-in-law took me to the grocery store and helped me read labels as I filled my cart with diabetes-friendly foods.  She then helped me bake my first batch of cookies, all carefully measured and calculated.  These two acts of kindness were not only practical, but very much appreciated.  She helped me address needs and took it upon herself to learn right along with me.

My cousin, a father, husband, and professional salesperson, was diagnosed a few weeks ago with lymphoma. He lives three hundred miles from me, and honestly, I haven't decided what to do for him.  A "get well" card seems insulting, a phone call might invade his privacy and be incredibly awkward, and a gift card for delivery pizza seems too simple.  I'm considering writing him a letter of support that he can digest when or if he is ever ready. 

My mother did the same for me.  Throughout my diabetes journey, which has now been four years, she's sent me encouraging letters. I have appreciated these letters for a few reasons. One, I can process a letter in the peace and quiet of my home instead of facing a person who expects some sort of immediate response (crying? confession?  thankfulness?). Two, these letters have come weeks, months, and years after my diagnosis.  The majority of my "support" came within two weeks of my hospital stay. After that, my diabetes, which is with me forever, was ignored or forgotten.  

A friend of mine who has multiple sclerosis is much like me.  We are independent and confident in our diseases, or at least we appear to be.  If someone leans in too close and whispers, "Are you OK?"  or "How are you doing?" with their eyes wide open, we get annoyed.   Although the person believes he or she is being sincere and helpful, the truth is, most coping is a solo journey and, oftentimes, a private journey. To know that others believe we need their pity, overabundant concern, or invasive and impromptu therapy sessions interferes with our process and progress. 

What do you say and what do you do when someone you know learns of a life-altering diagnosis?   I encourage you to consider the person's immediate needs and personality.  Is a "get well" card really appropriate?   Would flowers truly be appreciated over the offer to bring over a homemade meal?   Is a "Go forth and beat cancer" comment more comforting than an evening of watching a sports game on television or a visit to the local coffee shop?   Consider your own situation, and remember the day you were told that you had diabetes.  What did people do or not do for you?  What did you appreciate?  What were you told that was discouraging?  

When people have been informed that their life is about to drastically change, it is crucial to help them feel that they can deal with their diagnosis as they see fit.  They aren't required to enjoy get well cards, sniff carefully arranged bouquets, or tearfully confess all of their fears at the drop of hat when asked, "How are you?"   Each person and each diagnosis is different, and supporters should be equally unique in their responses.   A little of your time and creative energy can go a long way with someone who is facing a daunting medical unknown and a crowd of status quo supporters who are here today, gone tomorrow.

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Categories: Community, Depression, Diabetes, Diabetes, Food, Type 1 Issues, Type 2 Issues


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Comments

Posted by Anonymous on 5 April 2010

Rachel Garlinghouse sounds angry, ungrateful and over-sensititve. I was diagnosed with diabetes at age 35, (I am now 53) and got a lot of the same kind of comments. I never thought twice about most of them and when people said, Well at least it's better than cancer" I said "ya darn right it is!"
You should be thankful people care enought to aknowledge your condition. If everyone you know would have ignored you, you would have thought "no one cares".
Sometimes in life we need to look at the big picture.
You have diabetes: Learn to live with it and move on with your life.
People around you are concerned for you: Except that and don't get caught up in their particular actions.
And most of all...enjoy the rest of your life a lot more by lightening up and throw in a little humor. That ALWAYS works for me. Like when someone sees me eating a small piece of cake and says "should you be eating that with your diabetes"? I simpley respond with "should you be poking your nose in other people's business?" and I laugh which usually results in everyone around us laughing. That of course doesn't work in every crowd and fits my personality but not everyones.
The point is, get over the idea that everyone is incompetent and just let those little things go.
ENJOY LIFE! GOD ONLY GIVES YOU ONE.

Posted by Anonymous on 6 April 2010

Thank-you Rachel for your article. We all manage life-changing and life-threatening diseases differently. Empathy and support are necessary in varying degrees and go a long way to helping someone manage a health crisis. Dismissing or discounting someone else's pain and process is inconsiderate and hurtful. When my daughter was diagnosed with Type I at age 7, I was told to quit whining about it. This was because I was still weepy after 5 days! My so-called and no-longer friend said, "It's only diabetes,a shot of insulin a day and she'll be fine." I wish it were that easy. A kind word, a listening ear, or a homemade meal from caring friends were much more effective in helping my family cope.

Posted by lesincline on 6 April 2010

Hmmm. I think Anonymous is the person harboring a bit of anger here. I have never found throwing a comment like "mind your own business" back in some one's face to be effective--ever! Even with a laugh!
I really appreciated Rachel's essay. She acknowledges the misplaced good will of her well wishers while offering concrete ideas of what one might actually do to help people feel better. I think her ideas are terrific and right on the mark. We could all learn from her about our response when we feel awkward and useless in the presence of someone else's pain.
I, too, remember the invisible nature of diabetes. We look the same, we do not need cancer like treatments, but we never do heal and our injections are forever and done quietly. People forget except when they choose to scold us about eating cake. No one would ever presume to know what someone with cancer can eat or do, but they do with diabetes. I think Rachel has touched on a little discussed feeling that is quite common among diabetes. She deserves our thanks while we recognize that she is still grateful for her friends. Thank you Rachel!
Oh, and God has nothing to do with giving her life! That is your prejudice. And I DO think that she is enjoying her life as she writes about her feelings.

Posted by Green Lantern on 6 April 2010

I agree that the author comes across as angry and bitter. Instead of being snarky about all of the well-intentioned cards and flowers, why not be grateful to have friends who would go to the effort to make a gesture of support? Asking what someone needs seems to me to be more helpful than leaping in and doing something that might not be needed. Cooking a meal? To meet someone's new dietary requirements? Not necessarily a great plan unless you know what you're doing. A more neutral-in-tone article about what she DID find helpful would have been a lot more practical.

Posted by Anonymous on 6 April 2010

Hi Rachel,
I read your comments and the other posters and I have to say that I experienced similar when my son died. I have diabetes and no-one has offered any support and there are times that I am apalled by their ignorance of diabetes. If I go to their place for a meal, I am often faced with eat and have an enormous high or go hungry and get a low. Cakes, pastries & fruit platters and highly refined food most of the time. I step through minefields so mostly I eat and inject before visiting which I may say is becoming rare these days.
People send cards because they do not have the words to say themselves. I have always hated the phrase 'be careful' it gives no real advice or direction. Just accept that people mean well but are ignorant. Good luck and good management with your diabetes

Posted by Anonymous on 7 April 2010

Rachel made some good points. I was most grateful to people who gave practical help. However, a little sense of humour wouldn't go amiss. I wasn't allowed to fall asleep in front of the TV. Some incidents are funny, as well as providing and opportunity to teach without preaching

Posted by Anonymous on 7 April 2010

Thank you Rachel. You are so right. Why do people always seem to assume they know everything about diabetes and that it is nothing compared to cancer. Hey at least with many cancers you have a chance of a cure...not so with diabetes. And why do people assume that because I got Type 1 at age 29 that if only I had exercised and lost weight -maybe I wouldn't have ever come down with the disease. Oh yes I'e heard the lec tures. Of course they shut up when they discover that at diagnosis I was 5 foot 2, weighed less than 90 pounds, and jogged 3 miles a day. Until all of a sudden I didn't have the energy to get out of bed and couldn't run that far because I had to find a bathroom after a mile or so. Even my own mother said "well I know you didn't get it from MY side of the family" then threw away the educational book that I gave her. Would anyone EVER presume they could talk that way to someone who just got diagnoses with breast cancer--I don't think so. unfortunately diabetes is the disease that most people assume they know all about and say "my grandmother had that and she went blind". Good grief!!!! Most people know nothing about it-until they have had type 2 for ten years and their kidney function is already at only 50% and their eyesight is compromised. Why don't MD's routinely test EVERY overweight patient or even EVERY patient for diabetes?I worked with a guy who was over 50 and overweight and when he went to the MD he was told by his doctor that he probably had the flu and to drink lots of juice--by the time he got to the hospital his blood glucose was 1200. I guess we can't expect the average American to know much about the disease when even most GPs don't.
Of course having a president who claims to be concerned about health care and yet continues to smoke doesn't help.

Posted by rosiolady on 7 April 2010

When you feel you have lost any chance at good health from now on, it's the most natural thing in the world to grieve, and grieving is a process. I was diagnosed in 1970 and had much the same response to my problem as Rachel. I'm just horrified to learn that things haven't changed much! It took me much more than four years to come to terms with my type 1 diabetes, and in the meantime, since pretty much no one understands it, you flounder on on your own.

Posted by Anonymous on 7 April 2010

I have found that simply saying, "I'm sorry" when someone gets bad news is never out of place. Unlike the author, I also don't think that asking if there is something I can do is out of place -- especially if I ask periodically and not just when the event first takes place.

When I was diagnosed, I didn't tell many people at first because I needed to come to terms with my illness and learn how to manage it, which as we all know has a huge learning curve at first. I was diagnosed in 2006, and there are still friends of longstanding that I have never told because I know them well enough to know they will react in unhelpful or hurtful ways.

I do find that four years after my diagnosis I am comfortable sharing my personal experience and the knowledge I have gained about successful management with other people when they receive a diagnosis of diabetes or pre-diabetes.

Oh, and as for faux pas, the worst one I experienced was a comment from the nurse in our workplace health unit, who told me brightly and cheerily when I was first diagnosed, "Don't worry! It's a GREAT time to have diabetes! Why, they are coming up with new drugs every day! You won't necessarily end up blind, or with an amputation!"

Now, there's a true moron for you!

Posted by Anonymous on 7 April 2010

Rather than criticizing her friends and associates, and assuming they should do things to conform to HER way of thinking, maybe it's time to embrace their thoughtfulness. Admit it, your friends care or they wouldn't have done anything in the first place. Embrace the fact that your different, take care of yourself and stop looking back.

I was diagnosed 40 years ago and am fortunate to have remained healthy. No one is responsible for me, including my happiness, but me.

Posted by Anonymous on 7 April 2010

Hey! This is Rachel---the author, and I just wanted to say that my negative responses were natural at the time of diagnosis. I was very bitter and angry b/c I was facing a lifetime of diabetes---and no cure. That was very scary. But now that I've had diabetes for four years, I'm able to see what has and hasn't helped my friends/family who face a scary diagnosis and what might be more helpful to them. Cards can be sweet, flowers thoughtful, etc., but we have to remember diabetes is FOREVER and that the person needs encouragement for months, years, and decades. What can we each practically do for those who have been diagnosed that will make a difference? My point in writing this piece is to say---let's put some thought into our responses! :) I appreciate the comments, read each of them, and consider the opinions.

Posted by Anonymous on 7 April 2010

Diabetes is a lonely disease. People think you just stop eating sugar and you will be ok. I've even had a endocrinologist tell me "at least it's not cancer" followed by nothing that was helpful in managing this disease. So I can empathize with the author and I try harder to be mindful of others' health issues.

Posted by Bob(TimeForType1Cure) on 7 April 2010

Hey Anonymous and Green Lantern:
Mind your own business.
Nyuk, nyuk, nyuk!
I like Rachel's honesty, candor and perspective. And, I bet she's hot!
Here's to Type 1's ruling the world!

Posted by Anonymous on 7 April 2010

I value Rachel's honesty and can totally relate. I understand people are trying to be as helpful/supportive as they can but it is usually not helpful. Give people what THEY need, not what makes you feel better about yourself.
I love the idea of writing a letter!

Posted by Anonymous on 7 April 2010

I think it is a great article from the perspective of the patient. It is hard to know what to say or do for someone. People say 'just call if you need anything' or 'let me help if I can do something for you'. My personality, I would not ask people to give me a ride or make a meal for me, because I would not want to bother them. When my sister-in-law passed away suddenly, I found myself just 'doing' things for my brother-in-law, whether it be dropping off a meal or our family coming for a visit. But I also agree that before making a meal, perhaps it's best to get some info about their food restrictions. You can even get info from dieticians on-call at some grocery stores--but try your new dish, diabetics don't want to eat 'yucky food' either. Another comment that I liked was: diabetes is a life-long disease, so support is needed long-term. Altho I do not have diabetes, my husband & most of his siblings have it, and his mother. I sometimes have to laugh at the dishes prepared for gatherings--not diabetic friendly at all. My husband & I are still working on getting his glucose readings under control. Then at other gatherings, when I remind my husband that some dish is high starch/carb, other people comment 'just let the poor guy eat.'
I do think a card or flowers is still nice. At least you know people have you on their minds, even if they don't know what to say or do. Even giving something silly or unnecessary, sometimes a person needs to think of something else than just what they are dealing with in life. It is still good to laugh and enjoy a moment each day!

Posted by Anonymous on 8 April 2010

I have conflicting feelings about the article and all the comments. Having been a diabetic for five years and the daughter of a diabetic for more than 30 years, I have heard many comments from people.

I think the majority are well-intended even if seemingly superficial... I am glad they care.

I find it more frustrating to hear the ignorant comments about diabetes... "well, if you quit eating sugar" or "if you lose weight, it will go away". I would really really have someone say I am sorry than to start offering advice or opinions on how to treat the disease. Diabetes is so much more complicated than these comments. I believe the media and government (not the NIH, but the congressional and executive branches) do not help matters... they reinforce negative stereotypes and confusion about diabetes.

Each of us deal with our diabetes differently. For those who know and love us best, we can frankly discuss their comments. For others, I find it best to try and accept their sympathy as graciously as possible, realizing they may be somewhat clueless but are most likely well-meaning.

Posted by Anonymous on 8 April 2010

I completely understand Rachel's feelings and, after all, they are her feelings and she is entitled to them, no matter what any one else believes. We all handle things differently.
I have two boys, now grown, who were both diagnosed with diabetes at the ripe old age of two. People who thought they were being supportive said some very odd things, like:
"I don't know how you give your 2-year old a shot everyday. I could never do that." I would think to myself, "would you stand by and watch them die? Because that's my choice."
Diabetes is an emotional roller coaster for the patient and the caregiver. We need to band together and support each other as best we can.

Posted by Anonymous on 22 January 2011

I know people mean well, but the "I could never take shots, I'm terrified of needles" comment is really starting to get on my nerves.

I'm kind of different as I had a really good attitude for about the first six years after I was diagnosed. My doctor used to pat me on the head and brag about me to all his student doctors. I was OK with this disease. I could handle it. I was thankful that I didn't have to boil glass and steel needles. I was thankful when they invented long-term insulin that allowed me to sleep through the night without those panicky three am low blood sugars. I was thankful that I could test my blood sugar instead of peeing on a strip. I DID think that I was very lucky to get this disease now with all this new medicine and technology instead of before when before there was so much guessing. Imagine- waiting until you had keytones in your urine to figure out your blood sugar was high. All these tools that they have invented to help diabetes are WONDERFUL, and I have always focused on the fact that without them, I'd be dead.

I am different, I guess from other people, in that it took me about 15 years for me to realize that this disease never goes away. I mean I knew it, but I didn't really realize what that meant. Never goes away. No break. It's like having a stalker that is always there to kick your rear the minute you let your guard down. I had a wonderful support group of friends when I was diagnosed- my friends are all members of the medical community- nurses, doctors, pharmacists, and they were all sympathetic. They never asked stupid questions, or made inconsiderate comments-but they don't really understand what a shifty and deceitful and demanding disease this is. No matter how normal I look, and even with all the new tools and technology, I'm one stupid mistake from being history.

I was really tired last week, and I was sitting in the parking lot after working a 12 hour day and then going grocery shopping after getting no sleep the night before (I know I should have planned things better, but sometimes you just don't) I was feeling crappy and disoriented enough to warrant taking my blood sugar before starting to drive. It was 977. 977! 9 freaking 77! What does that even come out to in a cover shot? Holy cow, 977! I don't know how many times I've taken my blood sugar and taken a cover shot without even blinking, and the only thing that slowed me down, (cause I admit I had started to PANIC) was the fact that I didn't even have a syringe big enough to handle that kind of dose (I was that tired that my mind got to that problem and just kinda stopped, thank god)and then I remember thinking WAIT, I don't think that my meter even goes up that high, and I just happened to look down at my meter again and see that the code for my TEST STRIPS was 977. I re-tested and my blood sugar was 72. Even now, I'm still not sure how I mistook the code read out for my blood sugar, but I did.

One mistake- that's all it takes. One mistake. Shots, PLEASE, It's not the shots, its ME that I'm afraid of. I'm afraid, no I KNOW that one day I'm not going to be smart enough or strong enough to beat this disease and one day it will cost me my life.

If you want sympathy and support, that's fine, you can get that from your friends. If you want understanding, you can only get that from a fellow diabetic.


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