How to Help People Understand Diabetes

Type 1 and LADA
1

Hi all,

I have been Type 1 for nearly 12 years now and no one in my family (let me clarify: my parents/step parents and siblings/step siblings) has ever made any real attempt to understand the disease. My husband is AMAZING (he lost his step father, a Type 1, to kidney failure years ago, so he is very well-acquainted with Diabetes) - he educates himself right along beside me, goes out of his way to find new/better ways of management, and stood up to my (previous) GP when I was refused a referral to LMC.

I was diagnosed at the age of 17 and was left alone to navigate through the web of information presented to me. I lost contact with all parts of my family shortly after the diagnosis (during that time, I DKA'd, which included a mild heart attack, coma and brain injury, at the age of 19). However, I was fortunate enough to pull through without too much permanent damage - though my brain injury will never fully recover.

About 5 years ago, I reconnected with my mom and her side of the family. I was hoping things would change, I was hoping there would be more interest in my diabetes or an increase in knowledge, but still none of them seem remotely interested - I really thought this would change when I became pregnant with my (now nearly 2 year old) son. But sadly, they all act like it is all in my head - for example, when I am not feeling well or my blood sugars have given me a rough go, they simply tell me to "fix it and get over it" as if there is some magic button I can push...recently, I came under a lot of pressure (stress is a terrible trigger for me) and asked my family to give me some space, because I was worried the stress was going to cause my kidneys to become inflammed (as they do when my blood sugars run high) and, even after my husband asked them to back off, two members of my family continued to call/email, saying very upsetting things...

I guess my question for you all is, how does one help people to understand Diabetes if they have no interest? How do I continue to build this relationship with people who refuse to acknowledge my health issues?

I apologize if this is not the appropriate forum for such a discussion; I am a new member to the site and was eager for some opinions.

Cheers so much,
RR

2

Wow. You're in an interesting and sort of sad situation. I think this is one of those differences that folks face when diagnosed as a young adult (when they are independent and responsible for their diabetes care as soon as diagnosed) as compared to young children who have to rely on their parents' care for many years. Although it sounds like you were diagnosed at a time when you really could have used some help.

I am not a therapist/counselor, but if this were me, I'd probably try to make a final, last-ditch effort to educate. I would send them a book about type 1 diabetes that explains it in the most basic facts. And I would refer them to this site; perhaps reading posts from people living with the same condition can help them understand that it's not as easy as just fixing your BGs and moving on (if only it were that easy!).

Maybe this can all be coupled with a strong ultimatum that they either need to learn about what you go through and try to be understanding (and describe what you mean by being "understanding"), or leave you alone so that you can focus on your health and take care of your son.

You also may want to point out that it behooves them to learn about type 1 diabetes and how to manage it because the disease has strong genetic implications for any blood relative of yours (specifically, their chances of getting it are higher than the average person, so they might want to learn the facts about it).

3

Thanks for your reply - my husband and I have made numerous "last ditch" efforts; I belong to a clinic that even does a family day to educate the families of diabetics, but alas, no one was interested.

I further appreciate that someone else shares my opinion (that they should leave me alone to focus on my health) - thanks.

I've expalined all the implications genetically speaking (what is further frustrating to me is my paternal grandmother's cousin is Frederick Banting, so long before there was me, someone in my family had been advocating and helping create synthetic insulin, for diabetics!); however, nothing seems to spark them :(

Again - thanks for the response, first time in a very long time I didn't feel alone in my plight!

4

You are not alone. It's just so sad that your family has this attitude -- especially considering you're related to Frederick Banting!! Eek!! That is so freaking cool!!! (Sorry, I have a thing for "diabetes history" so this is just so. so cool).

Yeah, I say if you've done what you can and they just aren't responsive, you need to focus on the family you have now - your supportive husband and your child. You need to be there for your son and husband, and that means doing whatever is necessary to stay HEALTHY. I know it's hard to think of basically cutting them out of your life, but you've gotta do what's best for you.

I think one of the best/worst things about living with T1D is that it forces you to really scrutinize your relationships with other people. I have cut off friendships before because I didn't feel the other person was supportive/understanding of my life with T1D (like the fact that I can't always go out to eat on a moment's notice or do something spontaneously because my BGs aren't cooperating). Having to do this can really stink sometimes, but the good thing is that (for me, at least) it has made me far more appreciative of the people who remain in my life. They are true friends/loved ones and I guess I feel it's sort of a gift to be able to see the difference.

5

A lot of "straight" people think that it's just a matter of taking shots and getting over it. To me, the shots are (or were, since I have a pump...) the easy part, the hard part is balancing the insulin 'rushes', food, stress, life, astrological influences, sunspots or whatever all the other things that all add into whatever your BG is at this point or that point in time.

The only other thing I've done that involved balance so much might have been Tae Kwon Do, where we'd practice and practice and practice but there was *always* something to improve, jump higher, spin faster, stretch more, squat lower or whatever. I don't ever talk to anyone about it though. MrsAcidRock and junior realize when I'm out of it but I am the only one involved in making decisions. And, well, you guys...

6

Wow - this is amazing...I have no words to explain how much this discourse has helped me nor did I realize how much I have in common with other people (feel a bit alone sometimes w/T1D - lost a lot of friends who didn't understand and already parted w/my father's side, so this situation is a tough one)...
And I totally agree - being able to see the difference is something not to be taken lightly...like a trust your gut kind of thing!
Oh, and yes...totally related to Banting; I have, what is known in my family as, the Banting eyes ;)

7

Cheers for the reply - balance is a BIG one, hard to achieve sometimes...I rely on the great outdoors, my hubby, my wee one and my art, without those things (and now here...this is a pretty great place, and I've only been here a day!) I'd probably be lost...

8

I love your comments, AR! No one but a true D understands the experience, the balance and all.... I wish they would know more, but....

No one in my life, except my beloved husband, who is my rock, even pays attention. Like AR, he notices when I am low, but no one else recognizes the symptoms. Ocasionally someone will notice and be peeved that I was weird: "Make sure you are OK before we come over!" I love them, but totally hate the lack of understanding.

Actually, my workmates are the best and most educated, as they just accept it, know what to do (I teach them), and notice/react well to real lows.

But I get it. D is a very personal situation. None of us are the same: Aunt Sally did this, but Mike does that. From this forum, we all get that it is different for each of us. However, we are invested in this and understand each other's pain. It is hard to feel from afar.

Why is it important that other's pay attention to your D? Is constant monitoring needed? I agree that you are the only one making decisions. The uneducated....not so much.

My mom and grandma were both T2s (skinny as a rail, I might add) and it was their "undoing." My Dad dealt with that for years and never really understood it. It just scared him to death, as he loved my mother so much. The T1 thing with me in 1961 was an unknown and was treated like T2. Over the years, when we were in different places,he did not see the changes or understand the effects of T1. Not his fault because he tried. And loved.

I guess I am saying that it may not really be their lack of caring, but more a lack of understanding. Very common, I find, except in marriage. A good partner will learn, accept and protect, or.....

I wish you the best.

9

It really hits a nerve in me when people throw out the old "diabetes? well that's no big deal" card - it is such a complicated thing, people really have no clue...
I worked in a pharmacy years ago, suffered a low and was regrouping w/some orange juice in the staff room and the pharmacist/owner came in and asked, "are your sugars high or low?" - I was shocked! He distributes drugs to people and he is asking me if they were high or low as I sit there sweating, shaking and drinking orange juice...

10

I appreciate you taking the time to read/reply - that is just as good as the best advice ;)

And I'm a BIG fan of effort - a lil' goes a looooong way in that department for me!

11

What can we do to make people understand what it feels like to stand in our shoes? Ideas, causes, etc? Please list. New Post.

12

Cheers for all that - I understand finding the difference between caring and lack of understanding; unfortunately, in my case, I think it is a combination of a lack of willingness to understand, disinterest via fear, and just a splash of can't really be bothered (I was not in contact with this side for nearly a decade before reuniting 5 years ago) to get to know ME.

I am so blessed with the people present in my daily life (which includes a very supportive and understanding mother-in-law)...and I take such stock in that, and I refuse to let anyone or thing rob me of them...or them of me.

Cheers for your kind wishes :)

13

Just before I was diagnosed (T1 at age 57), my wife told me she ran my symptoms by a nurse she works with who said I probably had diabetes. My response was "diabetes - that's not a big deal". She told me it was and of course she was right!

If people don't want to understand, there's no way to make them. You are probably not going to get what you want and need from your family. That's a shame but at least you have a great spouse to help you. My family isn't great around my diabetes either. I just try to avoid having diabetes become a conversation topic when we're together. I know easier said than done.

Good luck,

Maurie

14

Sorry u had to go through this. As for ur question? I can kinda relate there. No step parents in my life at the time of diagnoses 38 years ago but there was my parents and my g=parents on my mom's side and although my mom took a real interest in Diabetes the rest of my family didn't (only child & g-child here)I guess what it finally came down to was they just didn't want to know so I gave up trying to explaine it to them. My husband does his best to understand but falls waaay short sometimes like ur family (and I've been with him for 27 years now) His mother was a Type 2 and passed (not from anything diabetes related but from cancer) about 15 years ago. Our daughter is a Type 1 too who took it at 11. I just honestly can't give u an answer if u've tried to explain it to them and they don't listen. As long as u've gotten someone in ur family helping u I think that is ur sounding board there. GOOD FOR UR HUSBAND!!!!

15

My heart goes out to you RR, it is sad to hear when people have felt alone in this. As a mom of a Type 1 teen that was only dx'd two years ago, I'm in a way lucky for having access to resources, technology and overall understand of D that was not available in the past. My grandmother was Type 1, dx'd at 16 in 1924. Insulin was so new at that time, just in time actually, so thanks to your relative, Frederick Banting, without his work, I may not have been born! There wasn't a number to go off of for a very long time, to me she must have lived on "feelings" and even when she felt high, she only had her one shot a day. Understanding D then and when you were dx'd, well I guess the doctors just didn't have the information to drive home to the families how important it was to manage the best they could. We were overwhelmed with stuff to learn counting carbs, sliding scale, MDI then later pump, setting basal rates, CGMS etc.. Though, as it moves away from me, my son then my husband understand D gets fuzzy, my mom says she can't believe how on top of it I am and says she doesn't know what she would have done if any of her children had it, referring to her educational level. I say, that's OK mom because I can only do this because is the level of care that is available now. My in-laws, that are well educated I handed the booklets, videos, emergency care sheets etc.. and they still don't get. Your best bet, in my opinion is to never let go of that great hubby, start your own family and join us here, in one day you've only scratched the surface, The TuD community is awesome.

16

Thanks so much, Maurie - I'm sorry to hear your family isn't such great support; hooray to terrific spouses ;)
Cheers,
Bec

17

Thank you Doris - I'm so thankful for the sounding board ;)
My husband is simply a wonderful person and it is lovely to watch him become an equally wonderful father! I'm glad you have the support of your husband (at least he does try - a little effort beats complete ignorance!), daughter and gkids - until I met my hubby I didn't think anyone w/out it understood it...and until I popped on here, I didn't know how I felt was 'normal'...

18

Emily,
Thanks for your reply - I admire your determination and quest for knowledge, education, information...your child is so incredibly lucky to have you for a mom. I wish I had someone with that desire in my life when I was dx'd. :)
I promise I will never let go of my hubby - best friend I ever had! And we were lucky enough to have our own wee one - he'll be 2 in a couple weeks (can't believe that, fastest 2 years of my life!); and I must say, on the in-law lever I am blesed. My mother-in-law (she lives w/us) is a champion of diabetes - she is a wonderful support.
I look forward to my exploration into this TuD community - I cannot begin to describe what a difference these few 'chats' have made today. Cheers so much.
Bec

19

I’ve been living with type 1 since 10 years old I am currently 32 and in all these years not one person in my family gets it . For example yesterday I was on the phone with an aunt of mine ( which whom I had once lived with from 13 until 20 years old) and I mentioned to her that I haven’t been on shots in like 12 years because I’ve been on the pump for the last 12 years and then I continued to explain to her that being on the pump is my choice it does not mean that my diabetes is out of control . Her response was " oh isn’t that implanted in you " and then I laughed and said " know it just connected with a straw like devise that is similar to a cathatha that you’ve probably had if you’ve ever had an iv . I tried to explain it as elementary as possible and her response was" oh really ( with a tone of voice like someone would use in response to somebody who just admitted that they have months to live) So I just changed the subject cause to tell the truth the conversation was making me question myself " do I really sound like I’m sick when I explain to someone that I’m hooked up to a pump ?
Even my mom comes up with the dumbest responses , I told her the other day that I’ve been going high alot after dinner and her comment to this was maybe you should go back to shots .

20

My sister, a nurse, asked me if i still had to test my bg since i was on the pump:(. I guess we're potentially getting closer to that point.