Geeks Vs Loneliness: life with a life-altering illness

A few words about hiding illnesses that affect us, and pretending that they don't...

Hello, and a very warm welcome to Geeks Vs Loneliness, this little bit of the site where we try and talk about things that may be affecting you, or people around you. If this is your first time in this part of the site, then a) hello!, b) come and chat to us in the comments, c) we don’t promise miracle cures to anything and d) not everything we write will be of use to everyone. Far from it. But e), hopefully there’s something we talk about in these pieces that may help.

This week, we’re handing over to the brilliant Lindsey….

Until the age of 17, I lived a relatively charmed life. I got on at school, had great friends, strong relationships with both parents. And I’d never really lost anyone. I’d reached that grand old age without being blighted by the Grim Reaper. Of course, people around me had passed, and it was terribly sad, but I was either too young or too detached from them to have it truly affect me.

Until we lost a close family friend that is. The husband of my mum’s closest friend, and dad to the two people I consider surrogate brothers. He died away from home, the effects of a particularly strong asthma attack being simply too strong for him to fight off. I couldn’t process it. Asthma wasn’t meant to kill you, it’s what classmates of mine had little blue pumps for, and when they used them it went away. It was devastating, so much so that I won’t dwell on it here, lest I dampen my keyboard. But it shook my very foundations, and they never quite recovered.

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Since then the idea of being struck down by something has always been a fear of mine. I had a few illnesses as a child, and live with a minor disability, but nothing fundamentally dangerous. So it was with relative apprehension that I headed to my university doctor’s surgery during my second year. My breathing had become laboured whenever I did anything strenuous, my chest hurt and I was plagued by chest infections. When he confirmed asthma, I went home, sat on my bed and cried. My only concrete association with it was that it killed, that it killed people I cared about, and that it did so indiscriminately. My friends took it better, confidently telling me it’s easily controlled nothing to worry about. I’d hardly notice it with my new meds. Wrong, so so wrong.

I was 22 when I was diagnosed, and it’s been an uphill struggle. I’ve fought off infections, viruses; I’ve adapted my eating, living, fitness, stopped doing certain things and going certain places. Taken enough steroids to give the Hulk reason for concern. I woke in the middle of the night a few years back, having had a dream that I couldn’t breathe. When I awoke, I still couldn’t and spent the rest of my evening in A&E set on the idea that I wasn’t leaving. But it’s okay; it’s only asthma, as I have been frequently told. My boss at that time was really concerned. She asked if I could still come in that day, they were rammed.

The past couple of years have been better. My general health has improved, and I’ve spent less time popping antibiotics than at any other point since university (seriously, at one point I started to rattle as I walked). I felt relatively at ease in myself, a very different outlook to a few years back when stepping outside in cold weather would cause palpitations. So it came out of the blue a couple of weeks ago, when, sat at my desk at work, my breathing started wavering and became harsh and ragged. Luckily I have pretty fantastic workmates who hot-footed me to hospital. Thank the universe for our NHS staff; I will be forever indebted to them and their wonderful care.

Again, I was facing the potential chance of not coming through the other side. Dramatic it may sound, but fight for breath for five hours without getting anywhere, feel your back and chest muscles seize up with exhaustion to the point where you just don’t think you can try anymore and tell me you wouldn’t be scared. I have no problem admitting it. It terrifies me how much easier it seemed at one point just to give up, than to carry on trying to fight. I was lucky again this time, I got to go home. Slightly worse for wear than how I’d left it, but in one piece nonetheless.

I wanted to take the time to talk about this with you, because in true British fashion, I tend to make light of it, rather than discussing how truly serious it is, and if I’m going to talk about it anywhere, then why not here with a community that I love?

It’s easier for me to joke it off than to explain how scared I feel a lot of the time, (I don’t want to sound overdramatic, or seem insincere), thereby making it easier for others not to respect it. But we shouldn’t feel that we have to undermine the severity of the things we all face each day in order to handle them. I’ve finally accepted that it’s okay to admit, to myself more than anyone else how much of an impact this has on me.

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Others have found it easy to be dismissive of this with me; it’s a childhood disease, no-one is ever really hurt by it. I’ve heard it all. Even recently, a supposedly close friend of mine has seen fit to jest about my last attack, texting to ask if I’d enjoyed skiving off work. A person who, when being told I was ill, made all the right noises, and proceeded to complain to others that they had been bothered by the news of my illness, it wasn’t their problem. That’s not okay, not when I’m not at a point where I can laugh about it, and am still dealing with the after-effects.

If you are suffering with a condition, if you live with the ramifications every day, talk to someone, don’t be afraid to share. Write it down, paint, talk on here. Just don’t bottle it up. It’s easy to underestimate what the people around us experience on a daily basis. I actively kept my experiences under wraps, but that’s hard to maintain when you start doing your best impression of Smurfette in the middle of your office. It’s been better since my friends at work have come to see how my health is affected. They’re considerate, and have been so kind. It’s made life easier, and I’m reassured knowing that they can handle the situation should it come up again, just hopefully not any time soon. My bank balance can’t handle the prescription bill just yet!

And I’m always a willing listener, if anyone ever needs to talk. It’s only fair after I’ve rambled on at you. If you’re facing anything similar, be safe and take care.

Thanks, as always, for reading…