Fearing the Uncertainty of My Future With Chronic Illness

When I was younger, I had big dreams – dreams to travel and go on adventures, dreams to do things no one has ever done before, dreams to experience all there is to do and dreams to run faster than everybody else. When I first began experiencing my symptoms, I didn’t think they would get in the way of these dreams, but as time went on, these symptoms didn’t go away. I struggled to learn that my aspirations may no longer be possible. I could no longer sleep in my bedroom (as it was upstairs), I couldn’t even walk around the house very far, hence the hire of a wheelchair. Every time someone came over I would hide in my alternative bedroom to make sure they didn’t see me in this state. School wasn’t really in the picture. I went to some periods and on not many days of the week. My friends were doing Duke of Ed, going to great places and doing these amazing things – well, those friends who stuck by me. Everyone else was moving forward with their lives and I was only going backwards.

I was terrified I would never be able to run again. I was so scared that all these dreams and all these great things I was going to do would never be possible. My symptoms of leg pain, bad headaches and fatigue were painful, but they didn’t compare to the ongoing stress and fear of my future.

After a while I began to attend more school, but that just meant the stress of schoolwork was more terrifying. Teachers assumed that if I was at home I was working; however, this was not the case. If I was well enough to work then I was working at school. Little did they understand that all my brain fog and fatigue made it impossible to concentrate on anything for more than 10 minutes. And so I was stressed over all my work that had to be completed. It’s really terrifying when you used to be a high-achieving student but then you have to endure watching your grades slip lower and lower. I had to drop an elective and the teachers said I would probably have to repeat history. The dread really settled in when it was assessment time. I was expected to complete my hefty portion of group projects, and I hated letting them down. Teachers never understood why I handed my assessment in late or why I couldn’t grasp a basic principle that was essential to the topic.

I can’t explain how sometimes I’ll be sitting in learning support or the health center and I think, how did I wind up here? Two or three years ago I would never have expected I would be attending regular homework help or having frequent visits to the hospital. In those moments I get a rush of dread that this is how it is, this is how it happens and I’m just getting worse, even if this is not the case. I had expectations of where I would be when I was 15, which now I see is ridiculous, but it’s still disappointing when you’re not even close to the mark. If I’m not where I thought I would be now, then where will I be in the future? I can’t trust my expectations anymore.

Though over time I’ve learned to relax over some school stress, it still really freaks me out when I get a flare-up of my symptoms. Over the past 10 months I’ve been gradually improving, and so when I have a bad day I instantly become terrified that I’m going to descend into the depths of my illness again. I get afraid that all this concentrating on improving my health is just going to go out the window in one bad flare-up and I’ll be really sick again. I get scared that the little fitness and strength I’ve built up over the year is going to disappear one day when I can’t get out of bed. The work that I’ve put into keeping up with my classes might just amount to nothing if I skip a day or two. It’s on these days that I’m even more determined to make the trek up to my bedroom or walk the dog down the street and back, which I do in an effort to prove to myself that I am well, I can do it.

It’s definitely terrifying, not knowing whether my health is going to continuously improve or crash and burn at some point. It’s definitely terrifying not knowing how my future is going to pan out. Most people my age have some idea of the subjects they expect to continue, the grades and milestones they want to achieve and what they expect to spend their afternoons and weekends doing. Though things may not always go to plan, most kids aren’t usually far off what they expected, but I have absolutely no idea what I will be well enough to do. I don’t know if I’ll ever be able to achieve any of what I had wished to do when I was younger. I guess it’s the uncertainty of how it will all turn out that really scares me.

So I guess it’s all a matter of learning: learning to accept what I can and cannot do, learning to accept the uncertainty of what might happen and learning to deal with each day, each step as it comes. I don’t want to come to terms with the concept of me never doing so many of the things I once wished, but it seems like I either have to let go of all those dreams or deal with the fear that they may never happen. So I’d much rather deal with all of this fear than let go of the hope that my goals are still possible. Even if it’s a slim chance, just a slight possibility I can achieve everything I set out to do, I’ll hold onto that until I can do those things – even if it means feeling that agonizing fear every so often.

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