Wednesday, June 29, 2016

I always wondered what my family thought

As I round the corner entering my 14th year with diabetes (jebus fuck I'm getting old!), I've found myself pondering a lot more things lately. A recent blog post by Mike inspired this musing.

What do my parents and siblings think? After 14 years? Somethings always separated me from them. I am the sick one. In retrospect even before T1D, I was always kind of the "sick one". I had the most chronic health problems (and still do). But Diabetes definitely makes me feel out-of-place now.

Christmas 2014

Here's the thing, I got diagnosed at 22. I had already lived on my own for a number of years and was in transition from graduating college before jet-setting off to teach English in Taiwan so I was living at home for awhile.

At 22 I still relied on my parents for a lot even though I was fiercely independent and self sufficient. My mum was - and always has been - my rock. But at that time she was a full-time high end business woman (not sure what else to call her) spending hours a day commuting to downtown Toronto. My father was a high school Math teacher with a lot of extra curricular teaching on the side. Both of them had VERY busy lives and weren't home all that much. My sister had already moved out and my younger brother was involved in his own teenage life at that time.

I should preface this next part by saying that although my family is close (including my two siblings), We were never really CLOSE close. Like, we don't talk about feelings and we don't tell each other how much we love one another. We don't really engage in physical things like hugs. We are a close family but we aren't emotional or touchy feely. In fact I'm not even sure the last time I told my mum and dad that I loved them or if I've heard it from them. I do love them and I know they love me but we just don't EXPRESS it.

This has resulted in a persistent state of wonder with me since diagnosis. What do they know about my disease? How do they feel and do they worry? Do they understand the emotional turmoil it has on me? I would assume yes since this blog is public knowledge. Also, they will read this.

I've never had those conversations with any of my immediate family and I'm not sure why. I'm not very private about the diabetes side of me. Look here, it's there in the open for the world to see (and read). I feel so much of it has to do with that not-so-delicate old age of 22 being that I was independent and mostly grown up. My treatment and doctors appointments were attended by me. I don't remember anyone else involved in the choices in insulin, injection doses, doctors and such. It was my choice to go on the pump and subsequently it was my choice to come off it. I've just felt a little bit disconnected from the people who truly know me the best. In all honesty though, I don't really care to talk about it either it was just a curiosity. I feel more like a burden on them than anything else.

Age is a factor. That time in my life is all a bit fuzzy and not just from all the drugs I used to do. I know my mum was there with me the day they pulled me out of the type 2 support group and told me I should be dead. I know she advocated for me in her desperate attempt to research the connection between the Prednizone and the sudden onset type 1. I remember her up all night on the internet (and at that time the internet was in its infancy) trying to find answers and madly searching if she had a case to sue the walk-in doc.

It just sort of all ended there. I love them but I don't know how they've ever felt about having a daughter and sister with such an awful chronic disease. I wish this wasn't a question at all but words about my diabetes have rarely been spoken of. It just feels like diabetes happened to me and life went on without question on the family front. I also know I do a good job at pretending it's not bothering me when really it upsets me MOST of the time. Don't get me wrong, the lack of conversation is probably a good thing. We have more important things to discuss like tattoos and dad's family dinner wine consumption.

That time they all showed up for the JDRF virtual 5km wearing T-shirts hand painted with heartwarming messages. I know they support me.

When a disease alters your entire life, you feel pretty isolated. A disease like diabetes that involves no one else but me makes it hard to see the effects on every one else. I see it on Ryan though, he's got nowhere to run from me, however. Mwahahaha....


  1. When we are Dx'd we can feel isolated. But the truth is as you age you will find many others out there who do understand. If you get the chance drop by TUDiabetes where our motto is no one should have diabetes alone and while you are not alone, drop in and see if it feels good to hang out with some of us who truly understand, we would love to have you join us.

    I referred your blog to the blog page for the week of June 27, 2016.

  2. I haven't asked my family either.

  3. Good read, Scully. As Joe's parent, I felt quite isolated for the first years after dx. My initial reason for Beta Buddies, I suppose.

    Our family is the "hugging, Ilove you saying, feelings talking type. Not sure if that drives my kids crazy or what.

    Ryan and you inspire me - your candor and your adventures!

  4. Great post - I feel that way too. For a long time I just didn't want to talk about it or admit that it was a big deal at all because I didn't want anyone to treat me differently... Over the years I let them in more about the ins and outs but I still think noone besides my husband really gets it because they don't live with me..

  5. Your family and my family are very much the same. I won't hear from brothers and sisters for years, but if I call to say I'm coming to town they want to get together. And we never ever discuss diabetes. Don't wait too long to tell them you love them. You know why.

  6. my family of origin's emotional style is to minimize everything---no big deal, we are special people so this won't hurt us, we've got it all so we can handle everything with grace and ease...

  7. Wow, sometimes I am totally blown away by how oblivious you are (and of course I mean that in the nicest of ways). Since you posted this publically I figured my response should also be public.Maybe it will help others who also don’t talk to their families about being T1D.
    Here is a list of my feelings (mostly or partially shared by your Dad and siblings – I don’t like to speak on their behalf).
    One – we all love you ,more than you will ever know., We all need to say it more so good point D Gal.
    Two – there is never a day that goes by that we don’t worry about you. If you were a normal sick person who was always letting people know that you are sick and need help it would be easier so see our worry. However since you are one of those people who get up every morning trying to think up new ways to torture or kill yourself and Ryan (although I think that Ryan has a pretty good arsenal of his own dangerous activities ready to suggest to you at the drop of a hat) then we try to hide our worry (otherwise you would just roll your eyes at us and none of us want to see that).
    Three – you have forgotten but there have been a few times when you have clearly expressed your felling to me about your disease. My most poignant memory was the day that you told me how stressful, frightening and lonely it is to know that you (and ONLY you) are responsible for keeping yourself alive every moment of every day for the rest of your life. Nothing ever made me feel like I understood you better than that, It really hit me like a ton of bricks. Whenever anyone asks me how you are managing with your diabetes, I first of all tell them what you said and then I tell them how strong, stubborn and awesome you are in the face of all your challenges.
    Lastly I think you are the most awesome person I have ever known,
    I have seen you at your worst – your lowest point – in complete melt down – and a couple of times as close to deaths door at you ever want to be – and yet you bounce back stronger, smarter, more stubborn and awesome than ever. You face every challenge and are never defeated by your fears. You are an inspiration to many people including me (yes I read your d-blogs and others responses.) When your time is up you will be one of those rare people who can truly say “I did it all!”
    We love you DGal and admire you and worry about you. We allow you your privacy because you have always demanded it – but we are always there for you
    Hey, wait a minute- you used drugs when you were younger????


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