It seems that there are a couple topics that come up on a semi-regular basis for me. Living with diabetes is one of them. I've talked a little about managing it with my climbing and running in the past, but glossed over many of the psychological factors. Based on several conversations I've had recently, I'd like to go into that a bit in the hope that other people with chronic conditions, diabetes, and auto-immune disorders may find something that resonates.
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In case you haven't figured it out by now, I have Type I, aka juvenile, diabetes. I was diagnosed when I was 4, and in many ways, consider myself lucky; I've never experienced life without diabetes, and thus dealing with it is literally all I've ever known. It's ingrained. People diagnosed with chronic conditions later in life, especially ones such as diabetes that require drastic and permanent life changes, often struggle with depression and controlling their disease. I personally know several Type 1's who were diagnosed in their mid to late-teens and still struggle to keep their blood glucose levels (BGLs) under control.
When you start looking into psychological effects of Type 1, a lot of what comes up focuses on juvenile diabetes and how hard it is on everyone around the shiny new diabetic and the challenges of dealing with young children and managing the disease. Diabetic children have a much higher rate of depression (close to 24%) than other kids (this seems like a 'duh', but is surprisingly easy to overlook). It's easy to feel overwhelmed by all the little things that are part of managing a chronic condition, which in turn can generate a sense of isolation, anger, and depression. Don't forget to factor in the influence a high or low BGL can have on your mood!
I've been managing my diabetes for over 22 years, and if I stop and think about all the things I'm constantly doing to keep a handle on this stupid disease, it's pretty overwhelming. I cope by basically ignoring it - my diabetes is a fact, and my lifestyle is built around accommodating it. That said, my parents have always been amazingly supportive and made sure that diabetes never kept me from doing anything. On the other hand, you hear stories of people who stop doing their favourite activity or decide not to train for a half marathon because they're afraid they won't be able to manage their diabetes. It's easy to let fear of your condition keep you from pushing yourself. After all, playing it safe is more comfortable than venturing into the unknown.
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When I was a teenager, I struggled with depression. I didn't let on to the people around me just how bad it was, but suffice it to say it's a bit surprising I made it out of high school. Looking back, I think a component was related to my diabetes, combined with a couple traumatising experiences. My parents got me to see a counsellor, but I don't recall ever talking about the role, if there was one, diabetes played in my depression. Needless to say, the sessions weren't particularly helpful and the sense of isolation and discontent I felt was unmitigated. I wonder now if factoring my diabetes into the equation would have resulted in a better outcome.
Having a chronic condition adds an extra layer to every experience. There will always be a small part of you that needs to hold back and observe. You can never shake the feeling that you're an outsider, not fully part of the world around you.
And we're back to that feeling of being different, that you will never be fully understood, that people will treat you with kid gloves because of some stupid disease that isn't your fault but for some reason is now defining you. You always wonder if you didn't make the team or get invited to the sleepover because the coach was worried about dealing with your condition, or your overbearing parents, or if you're just broken and inferior because your disease.
Chronic conditions suck.
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My Dad and I recently discussed an article about the psychological effects of chronic conditions, namely diabetes, and if/how healthcare providers can help mitigate them. The article posed a question as to whether having a chronic condition predisposes you to depression, or if depression is a symptom that could be used to diagnose. The crux of the matter being, how do you treat someone with a chronic condition and depression.
The question of 'what can I, as someone dealing with people with chronic conditions, do to help alleviate psychological problems' isn't one that had been posed to me before. People always want to help, and you're taught from day 1 to build a support network that can recognise and help treat high/low BGLs. The side effect of this, however, is people start to identify you by your disease.
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Before you get mad and accuse me of attacking people who care about me and just want to help, let me explain.
Diabetes is, by necessity, a lifestyle. Everything I do is, in some way, influenced by my disease. But I am more than just a diabetic. I have just as much potential as any other young women who loves to run, climb, and play in the dirt. When I train for a marathon, I may carry extra Gu and glucose tabs, but the hours, milage, and sweat I put in aren't worth any more or less than another runner's. My ability to climb a 5.11 slab has nothing to do with my diabetes and everything to do with hours of training, scrapes, and screaming muscles.
So when someone comes up to me and goes 'it's so amazing that you did that, especially with diabetes!', it taints my achievement.
I don't want to be defined by my disease.
I don't want other people to define me by my disease.
My diabetes didn't run the marathon, I did. Everyone has something to overcome, some personal demon to be vanquished. A knee surgery, jet lag, a colic-y baby that keeps you up all night. When we finish our marathons, we want a high five and someone to say 'way to go! You freaking rock!'
I am so much more than a diabetic who enjoys being active. I am a person who enjoys being active. I would much rather be lauded for my accomplishments because I'm a women than because I'm a diabetic. To build things up based on my disease implies that you expected less of me because of it.
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That said, I recognise that my diabetes brings an extra level of risk to everything I do. I've never pursued mountaineering because I don't want to deal with the logistics of carrying my glucose meter, extra insulin, and emergency food inside my jacket to keep them from freezing. Then there's the spare insulin pump or insulin pens, glucagon, and a few other things. And we have to factor in my amazing ability to get low 45 minutes into a hike, regardless of what my BGL was when we started and if I've been shoving sugar into my face. I have no idea what's causing this; it's only a problem on steep hikes, not runs, bikes, swims, or anything else. But in the event that things go sideways and I have a diabetic episode, the people I'm with are suddenly dealing with a probably belligerent, combative, and sick individual.
I hate being cold and have never have a burning desire to take up mountaineering anyway. The risk I present to my partners, coupled with the steps I'd have to take to manage my diabetes on a mountain, just aren't worth it to me.
But I want to you know that I absolutely could do it. I just don't have a desire to.
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To this day, I'm extremely touchy about being put on a pedestal as a diabetic. I won't deny that it's part of who I am, and I have no idea what my life will be like when a cure finally exists (now go donate so I can find out).
I truly believe that anyone can do anything they put their mind to, chronic condition or not. It takes work. It takes blood, sweat, tears, and endless frustration. But a disease does not make us less. There is nothing less about us. There is no reason we can't live our lives and define ourselves by our triumphs, achievements, and joys. When we allow ourselves to be defined by a disease, we let the disease win.
And you know what?
My diabetes can go fuck itself. I may have to deal with it, but it sure as hell doesn't make me who I am.
