It’s MY disease but… – by Helen May


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When I was diagnosed with diabetes, I lived alone. I had some very close friends who helped me understand how I needed to treat myself but most of the time, I just had to get on and do everything I needed. To be honest, I’m a pretty independent person: it’s good to have a friend to talk to but ultimately, I’ll do it myself. And that’s not just managing diabetes, it’s decorating my house, it’s getting my car fixed, … I’m not the best at asking for help.

That said I prefer not to be single. So throughout my life with diabetes I’ve had a few dates and a few short term boyfriends. Each time I meet a new guy, I’ve asked myself the best way to tell him about diabetes. I don’t want to lecture him, I don’t want to scare him and I don’t want him to take over the management, but I don’t want to hide it and I do want him to understand a little about hypos and hypers. So I like to get it out in the open as soon as possible. Just a simple, “Excuse me whilst I inject. I have diabetes.” On the surface, the few guys I’ve been out with seem fine with this (at least none have run away at the sight of the needle). However, I have a noticed a lack of desire to learn any more (whereas many of my friends still keep coming back with “another question about diabetes”).

Bearing that in mind, two years ago I was very happy when my new chap engaged in a discussion about diabetes and, after a few months, started to join me in estimated my bolus insulin when we ate together: it became our new game. Initially, our numbers varied greatly: his doses were typically lower than mine but as he said “I won’t kill you straight away!” Over time, his estimates became closer to mine and I started to question some of my estimates. It was great to have someone to share with. And two years later, it’s still great.

There are still times when I have to remind him that I have diabetes. For example, I like to go to bed with a reading I know is not changing: so I try to avoid eating for the two hours before I turn in. But my partner enjoys a late evening supper. Or when we go out for a night, I always have to remember my diabetes when I am drinking and not overdo it. But after a tough week at work, my partner enjoys letting himself go a little … and then having a late kebab on the way home.

The other side of having a partner is there is someone else to ask the whys: why did I have three hypos that week? Why don’t I always get my insulin right? I sometimes thought perhaps it was easier when I just dealt with it myself: when I didn’t have to justify my readings to anyone. That was until I was reminded “if you care for someone you don’t want them to be ill.” So if his questions make me question myself a bit more it’s a good thing (although I still sometimes get frustrated … but that might be because I’m more likely to have short fuse when I have low BG).

Oddly, now I have someone who cares for me, I think I understand how parents of children with diabetes feel. And although this is MY disease and I managed it by myself for eight years, I know I’m not alone.

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2 Comments

  1. Declan says

    Hi Helen

    it’s an interesting subject. I’ve never found a problem in telling people, but the living with it afterwards, during times of change is difficult.

    About 10 years ago, I was slowly and undiagnosedly (despite going to endocribe consultants in Belgium and Germany at uni research hospitals) developing Addison’s disease (lack of cortisone) in addition to my long standing IDDM1, which sensitised me to insulin. Living between 3 countries, with my wife back in London, I noticed the hypos were growing more frequent. Eventually my wife, who was effectively on night watch on my monthly trips back to London, became exhausted by the whole thing and we got divorced. Afterwards I was diagnosed with Addison’s disease at King’s College London (all praise to them) and am much better now. But from the undiagnosed part, I also had to give up my job, oddly enough in vaccine research.

    Sometimes the losses are pretty heavy, aside from one’s own health management issues.

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