I’ve been wanting to write about this for ages, but fear of it turning into self-indulgent wank kept stopping me. Oh well…
A few months ago I read an interview with Kathleen Hannah in Bitch that gave me a light-bulb moment. She speaks about the debilitating effects of Lyme Disease, and two simple words – “invisible illness” – spoke volumes to me.
About four years ago I got really ill. Not cancer ill, not dying ill (though at times it felt like it) but “what the fuck is going on?” ill that took a long time to get to the bottom of. And it didn’t go away, it just got worse. The initial symptoms were a persistent cough, back pain, sore throat, croaky voice, incessant burning in my stomach and chest, and weight loss. I eventually went to the doctor thinking I had pneumonia or something, but these were all signs of what was eventually diagnosed as GORD. It transpired that a course of anti-inflammatories given to me for a trapped nerve and back pain (caused by regular running) had fucked up my stomach, my oesophagus was permanently damaged and I’ve got acid reflux for life. A friend joked that I’d internalised my bilious personality, which was funny and not funny. I’m sort of ok with this now. Apart from occasional flare-ups, 80mg of esomeprazole a day does it for me.
But that’s not what this is about. Around the same time I felt like I had an acidic parasite of Giger proportions living in my body, I started having what I can only describe as “attacks” whenever I did anything vaguely aerobic. It started at the gym, doing my usual warm up on a bike. Out of the blue I was having trouble breathing, palpitations, and, desperately wanting to get out of my own body, I fled to the toilets and started taking my clothes off in full-on panic attack. This kept happening – I could just be walking, or wiping something up off the floor and the breathing thing would happen. Please note that this was not some sudden psychosomatic response to housework or exercise. Until this point in my life I’d been really fit and keen on exercise, with regular running, boxercise, circuit training, gym sessions, etc. At 5′ 2″ I took pathetic pride in being able to kick a punch bag above my own head height. Suddenly I had to be careful not to turn over in bed too quickly, or nonchalantly stand on a chair to close a window. I’d always taken running up stairs for granted, and suddenly they were my enemy.
Because my GP was so focussed on the GORD, it took a really long time to get to the bottom of this. And, naturally, I was convinced it was all part-and parcel, plus a bit of internet surfing showed that severe reflux can affect breathing (though my GP kept insisting this was not the case). So I had to keep going back. The reflux had improved, but I still struggled to walk up hills and stairs and had completely given up exercise. At my very worst I could only walk for a few minutes before feeling I might collapse. This would last for weeks, then slowly, I’d start to feel a little better only then to have another attack and be set back for weeks. I felt ok so long as I didn’t move, so I avoided moving (which was pretty fucking miserable).
After many return trips to the doctors an X-ray showed enlarged lymph nodes on my lungs and they suspected Sarcoidosis. This diagnosis took 18 months from first feeling ill. Plus it transpired many of the symptoms were similar to reflux, such as the never ending cough. I was referred for an MRI pus various other tests, including getting my knockers out in front of a really young, good looking guy to have an ultra-sound and various other tests on my heart. Cringe! My heart was clear (phew) so the focus was on monitoring my lungs and hoping it would clear up all by itself. A pattern emerged whereby I’d slowly start to feel a bit better, be able to do more and walk farther (but still not partake in anything aerobic – this inevitably impacts on bedroom action) but then I’d have another “attack” and feel completely debilitated all over again. I was living with an invisible illness, just like Kathleen.
I’d never heard of Sarcoidosis, and my GP advised me not to go reading up about it online as I’d only scare myself. So I didn’t. I was given fuck-all information, and just went for my regular chest clinic tests every three months so they could keep an eye on me. Publicly life carried on almost as normal, I still worked, mostly from a desk which really helped, and I would only occasionally have to apologise for taking the lift instead of the stairs when going to a meeting or whatever. There was no point trying to explain to people what was wrong with me because I didn’t understand it myself, I just let them assume I’m a lazy fat fucker, it’s easier.
So this is probably where I should explain what Sarcoidosis is and what causes it, but I can’t – because there are no definitive answers. I can tell you it’s an inflammatory disease that can affect any part of the body, but most commonly the lungs. Some people liken it to auto-immune diseases, so instead of your immune system healing your body, it actually attacks healthy organs. For me it was initially utterly debilitating, particularly as I’d been so fit and well before. One of the hardest journeys for me was accepting that I was no longer “me” – as being fit, active, and energetic was a big part of who I was as a person. I didn’t really talk to anyone about it, not friends, and certainly not family because it’s so hard to explain without sounding like a drama queen. One of the defining features of this disease is that you look perfectly well on the outside. So when you bump into someone you haven’t seen for a while and they say “You look well!” you indulge the phatic communion and take it. You’re not going to say “Actually, I just stood at the bottom of a staircase crying because the lift was out of order and you have no idea of the risk I take every time I walk up a flight of stairs” because that sounds like sheer melodrama. As I’m sure people in the Facebook groups will attest, you’re also inclined to think every little ailment might be linked to your sarc – like the pain I’ve had in my arm and shoulder for months now, and the ear piercing I got that still hasn’t healed after 9 months.
So this is where I’m at now. My last full-on attack followed by months of feeling terrified and not daring to move was in May 2012. Very slowly, I started to feel better, could walk farther, could tackle a flight of stairs with maybe just one little rest half way up (I usually pretend to check something on my phone so I look less pathetic) . Quarterly tests showed that my lung-function was slowly improving and the sarcoids slowly shrinking. I knew I could have a set-back at any moment, and never take good heath for granted now, but I was feeling over the worst of it and determined to be positive. The hospital signed me off in December 2013 as my lungs were “almost normal”. I’ve had a couple of flare-ups this year which set me back for a few weeks, but not as bad as before, and the Doctors would call this being in remission. Apparently sarc leaves scar tissue, which could explain why I still don’t feel completely well, especially with hills and stairs, but I can handle this so long as it doesn’t get worse.
Other people with sarc (online) have taught me a lot. I never took any of the and horrendous steroids I’ve read about and am grateful for small mercies. They’ve opened my eyes to how variable this condition is, and how lucky I am compared to others. Enough people have died from Sarcoidosis or related complications to scare the shit out of me. I’m not who I used to be, I can’t see me ever running again or doing anything too active, but at least I currently feel mobile and, like anyone, have good days and bad days.
Something that does piss me off a bit are the running apps people use, which didn’t exist in ‘my day’. I can’t help but feel a bit jealous when people post their athletic achievements on social media, and wish they would stop bragging. Unless they map pictures of cocks on their running routes, of course, I’m down with that.
If you have a few pence to spare please consider donating to Sarcoidosis research next time you’re feeling charitable. It doesn’t attract much funding, perhaps because there’s currently no profit in it, but wouldn’t it be great if we could find out what causes it, or maybe even develop a cure? SILA is UK based Sarcoidosis charity and there’s Stop Sarcoidosis in America. Comedian Bernie Mac had sarcoidosis and died way too young – this foundation was set up to raise awareness in his name. And many of the first responders on the scene of the 9/11 attack have gone on to develop this illness, plus other respiratory diseases, leading to more theories about possible environmental causes (but still not enough research, so please donate to encourage this).