My daughter is 10 and was diagnosed less than a month ago. We have made this public only to people at her school that care for her and our family.
However, everyone always says “I’m sorry.” And I have to be honest, it makes me mad. She’s still the same little girl she was 4 weeks ago when she was undiagnosed. She’s still doing everything she was doing before and she will continue to do that. I really don’t want people to look at her differently and think there’s something wrong with her.
And adults…they are the worst! I’ve had people tell me that she’s going to go into a coma, people tell me she will die, telling me my days of sleeping are over. ARE YOU SERIOUS? You think there’s anything you can say to me that I haven’t thought of already?
How do you cope with this? I don’t know if I’m being neurotic or if what I’m feeling is normal.
Any advice would be great.
Fortunately, I haven’t had to cope with the diagnosis of a child, but as an adult with type 1, I can tell you you’ve only just begun to deal with the stupidity and misinformation surrounding this disease. I tell people I’m lucky I was diagnosed, and especially in these times! The tools we have, the knowledge, the connectivity of the internet; so much has made this a manageable disease. I’m actually healthier than if I’d never been diagnosed; I pay much more attention to my health and healthy habits than if I weren’t diabetic.
You’ll have to develop a good comeback or thick skin into the foreseeable future; you’re going to hear things like, “put her on the MacDougall diet; that’ll cure her!” or, “Now she can never have birthday cake again.”
I’ve made it a point to educate folks where I can and dismiss those I can’t. I’m guessing people who learn of your daughter’s diagnosis simply don’t know what to say. I, too, am sorry she was diagnosed. It can certainly be a bummer and obviously everyone wishes she didn’t get it.
I suspect you and your family are all pretty raw around such a new situation. Hang in there!
I definitely feel your pain! I was just diagnosed earlier this year, and was pretty shocked at some of the comments I got from friends who I thought would be a bit more understanding.
-I was asked if it was “all those cupcakes” I liked so much
-I was asked if I was going to become fat now (no, seriously, that was their wording)
-I was asked if my risk of cancer was higher now
-I was asked if I was still able to have kids
It got so difficult for me that I actually stopped telling people about my type 1. I had already planned a move across states for a job transfer, and in my new home I just didn’t tell anyone for awhile.
I have finally gotten to the point where I’m telling people again, and I think I’ve learned a few things. I have now had some practice in the WAY I bring the subject up-I try for as casual as possible, such as when I’m offered food and say, “Oh, no thanks, I watch what I eat because I’m diabetic.” Nothing dramatic, but it puts it out there. And I’ve also been blessed to discover that, among all the rude questions, there are some awesome people who will walk alongside me with this disease, being there when I need them, and stepping back when I don’t. I would strongly encourage you to see if there is a JDRF chapter that meets in your area-my local group has been a huge source of non-judgmental encouragement and support!
At the end of the day, I’m afraid you’ll still get the comments. I still do for sure. I’ve tried to re-frame how I think about it; instead of an annoyance, I try to view it as a chance to be an advocate, both for myself and for others with type 1. Gently but firmly correct the misconceptions, and allow the fact that your daughter will thrive and turn into an amazing woman serve as an example to them of what it means in the MODERN world to be diagnosed as type 1. Hopefully, if we all take on this task, we’ll work toward a world where there’s a little more awareness.
All the best!
I understand how you feel. My daughter was recently diagnosed too. I have heard “I’m sorry” many times as well. I think people feel awkward and they say “I’m sorry” because they don’t know what else to say. Hearing people make comments about the dangers of type 1 can be very difficult. It reminds me of being pregnant and everyone telling you their childbirth horror stories. I’m sure some people have good intentions but it can be annoying. I think having a good support system helps a great deal. I don’t think you are being neurotic at all. You feel how you feel and that is perfectly normal. Hope this helped:)
Everything your feeling is normal! This is life changing for you all. I know it can be very frustrating. Words are powerful and people can be very ignorant when it comes to diabetes. I remember having one friend be so positive, it really helped and encouraged me to know that I could handle being the parent of a type 1. She said, that she had a good friend growing up that was type 1, and it didn’t stop her from doing anything. I still think of that conversation and it was over nine years ago. Focus on the positive and tune out the negative. Every life touches so many other lives, that’s what I tell my son. We have to be positive and educate others. Tell her she’s going to be stronger and smarter and more responsible than most of the ten year olds her age. You can do this, and she will be fine.
It makes complete sense that you are bothered by the comments. People can be ignorant of the realities of any disease and not know what to say or do. After 49 years with this disease my best advice is to teach your daughter to be self reliant and how to self-advocate (especially with healthcare providers) and encourage her to keep informed about nutrition, research and medications. You both become teachers, advocates and voices for Type 1. My mother did this and it has helped me to cope and keep myself healthy.
My trick was to reframe the “I’m sorrys” to mean “I’m sorry this happened to your family” and it helped me. Maybe you could try this. My daughter was dx at age 8, now 19 a sophomore away in college! Also check out Kerri’s excellent blog sixuntilme. She was dx at age 6, now married with a baby. A success story that gives me hope on dark days.
My daughter was diagnosed 8 months ago, she was 9 months old at the time. I know how you feel, and I remember all the “I’m Sorry’s”… They slow down, but I don’t know that they ever go away.
I still get mad sometimes. Not mad at people, or mad at the sorry’s - but just mad that my little girl will be burdened with this. And I think that’s okay to be mad sometimes…
But she will also be stronger because of it. She will have a greater knowledge of her body, and a greater knowledge of being healthy and active than most children her age.
She will also be growing up in an age where technology is advancing and changing so rapidly that there is no doubt in my mind, there WILL be a cure in her life time.
Stay strong Melissa.
Oh yes. I really love the tragic stories people are eager to share about their uncle/neighbor/grandma/3rd cousin etc who had “diabetes” and all their complications IN DETAIL. When I ask if they had Type 1 or Type 2 I get a blank stare. I usually use this opportunity to explain the difference between the two, how the treatment has evolved, etc. However, on a few occasions, when I am not feeling so patient and indulgent, I have responded with “Why would you tell me that?”
I would guess that dealing with insensitive comments is a part of dealing with any nasty disease. Some days it’s just harder than others.
I am newly diagnosed as type 1 at age 37. It was quite an adjustment, but i feel better health wise. I wish there more positive people with this disease. I am constantly reading and hearing negative feedback. I have learned taking good care of yourself the disease is manageable.
My son (11) was diagnosed 2 weeks ago and we are receiving mixed responses. Our friends who are touched by Type One are the most sympathetic most others don’t understand the condition at all. Some think it is “just a blip” and this response really bothers me because it minimizes our situation.
For us the truth is that we now have a son who is dependent on insulin and the information provided by the monitor. I know he will likely be fine but we know people who are suffering horrible consequences for not managing their Type One condition and I fear this for my son.
I am still in disbelief and I pray that he will be healed by a miracle.
I can’t imagine being a parent of a child with T1D; it must be so stressful and just fatiguing. I remember distinctly the comments and expressions of sympathy I got after my diagnosis 2.5 years ago. I felt like I had been marked as some sort of defective human, and it just wasn’t fair. My coworkers and friends seemed to be nervous around me at any engagements involving food (don’t pass her a cupcake!), and it was so frustrating to have to explain over and over and over again that T1D wasn’t a death sentence, wasn’t even a ‘no cupcakes for you’ sentence. Sometimes I reacted angrily, and then I became frustrated with myself for being rude to people who were probably trying to adjust to my new life, just as I was. I eventually found a good balance. Now, when people find out that I’m T1D and make an uninformed comment, or express unwanted sympathy, I do try to take the time to explain it to them. Education is powerful. On those days, though, when I don’t feel like being the one to explain everything (and there are many), I just politely say, ‘Thank you. I understand you’re trying to be supportive, but it’s really not necessary. I’d love to talk to you later about the misperceptions around Type One diabetes. But right now let’s eat cake.’ That usually works. And honestly, learning to navigate all the comments and misperception and, in come cases, outright discrimination, has really been a valuable character building experience. So many other problems just seem easy as pie now.
T1D sucks, but it’s incredibly manageable and hasn’t stopped me from achieving anything I want to do. It’s hard to see in the early days, but it will be ok. Stay strong, educate people when you can, don’t listen when you don’t want to, ask for help, and don’t feel bad about yourself if you have a bad day.