(Originally published on my old site on 3 January, 2015. Since it was written I’ve changed doctors and treatments and I’m currently making slow but significant progress on reducing a lot of my symptoms. I still have a fair way to go, but I’m a lot less incapacitated than I used to be and no longer reliant on strong opiates to control my pain.)
I turned twenty-five recently. A quarter of a century. Not so very old.
I like to think I’m a little wiser than I was just a few years ago and that the trend will continue.
However, I’m still stubborn and prone to having unrealistically high expectations, standards or goals for myself.
This would be less of a problem if I didn’t tend to beat myself up whenever I fail to meet them.
For instance, a few years ago I decided that I’d have a novel finished by the time I turned twenty-five. Of course, finishing a book would be a great achievement and is a worthy goal.
Nevertheless, incorporated in this ‘motivational’ goal was the unvoiced, underlying assumption that failure was unforgivable; a kind of mark against my name. I would have nothing or nobody else to blame. It would be a result of laziness. No excuses.
So do I have a finished novel manuscript? No, I do not.
Part of me says that I should be ashamed, disappointed in myself. Another part says that being upset that I haven’t finished a novel at twenty-five reeks of a certain type of arrogance and privilege.
I should know better.
But why was my goal so unrealistic?
Firstly and most obviously, it was inflexible and didn’t allow for any unexpected events or change of circumstances. And in my case, it didn’t allow for reality. It was based on a kind of best possible scenario that I took for granted. Who knew I was such an optimist?
It assumed I would be physically capable of achieving my goal without doing myself damage. Balancing a novel with work and uni may not seem like too much of a stretch for a mid-twenties woman who (for all appearances) is whole and physically able. But for me it probably was.
I assumed that my chronic medical conditions would politely step aside to let me do my thing. Despite knowing better, deep down I still thought I was invincible and that my problems would go away because I had ‘shit to do’.
Let’s have it outright. I suffer from a chronic illness. Some parts of it are not curable. Some are meant to be controllable, but we haven’t quite got there yet.
I am one of many people who might not look particularly sick in person or in photos but is not particularly well in reality.
If you meet me on the street, maybe I look a little tired, but who doesn’t these days? If we are friends you might notice that I have a tendency to make commitments (I definitely will not miss your party!) then cancel at the last minute because of some ambiguously explained illness. Still, it could quite easily just mean I’m slightly antisocial or dislike crowds. If we are close, I will eventually give you more to go on and then a full explanation.
The exact details of my illness (which turns out to involve a number of separate but interacting conditions, one quite rare) are complicated, gory and quite personal. There are still some taboos about health and although my illness is a large part of my life I’m not quite brave enough to post the details online for all to see. In the past, refusing to give certain details has resulted in some people not believing I’m actually ill or making their own assumptions about what my mystery illness might be. You learn who your friends really are when you get sick. Hopefully it helps you appreciate those who stick by you even more.
My symptoms include severe pain, nausea, migraines (with vision impairment), fatigue and insomnia (those last two are a fun combination). Directly or indirectly, my illness also contributes to depression and suppresses my immune system. The only painkillers that are strong enough to work knock me out for a day or so.
Even when I’m not completely unable to function due to excessive physical pain or migraine, I often feel like I’ve just woken up the morning after a bender (without the fun part earlier).
I tend to downplay my illness and try to hide the symptoms most of the time (although I have got more open about it in the last few years). However, it does prevent me from being able to do a lot of things and has a large impact on my life.
Sometimes it feels like my life revolves around being sick and my biography might be titled ‘Strange and Unusual Illness and other stories’. Maybe it is a pop-up biography? Whenever I think I might get a break from being sick back up it pops!
I had symptoms that something wasn’t right since my mid-teens. However, I had a lot of other things going on at the time, including the long illness and death of my father, so I dismissed them.
When I look back, I ignored or explained away some pretty dramatic and obviously abnormal symptoms as ‘probably normal’ or ‘all in my head’. I wasn’t in the best state of mind at the time and I’ll admit that part of it was that I considered my own pain to be both a symptom of weakness and a deserved punishment for the only person I could bear to blame for the bad things that happened in life: myself.
I was wrong (and not for the first or last time). I was sick. And eventually, a couple of years ago, that was confirmed by multiple doctors.
Due to the complicated nature of my problems, they took a fair while to identify.
This is probably also why I am still trying to find a way to control them a decade after my first symptoms.
Complicating matters is the fact that I cannot tolerate any of the medications usually used for one of them. I have tried every one and they all just make me sicker. I’ve tried new drugs that are supposed to have fewer side effects and aren’t usually even available here. None of these worked for me. I hope they work for other people.
Why did I get sick? Probably just bad luck.
One of my conditions is thought to be caused by genetic autoimmune issues. This seems plausible, as I have a family member who suffers from a rare autoimmune disease.
Part of my illness involves uncontrolled tissue growth which attaches to nerves and organs. This causes a lot of pain and various other unpleasant symptoms. Luckily, in my case the tissue is not cancerous, despite what I’ll find if I Google search my symptoms.
On a related note, I avoid the internet for anything health related. If some article isn’t telling me I have cancer, it’s telling me that my conditions increase my chances of getting it or that the drugs I’ve trialled will give it to me.
I have read helpful articles by other people with similar conditions though. But usually these have been linked to me by friends and not found by typing my symptoms into a search engine.
As far as I know, there is little to no medical research ongoing to find a specific cure to my problems, although my doctors are still trying to find ways to control my symptoms. This is partly because it is not one disease, and also because my unique combination of conditions is quite rare (involving some genetic and some developmental mutations). Furthermore, most people respond to at least one of the available treatments to slow the tissue growth that causes a lot of the trouble.
It has become clear to me that I can’t sit around putting my life on hold while hoping someone will invent a perfect cure.
Personally, I tend to feel a bit better for about six months after surgery to remove the excess tissue caused by one of my conditions. I have a bit more energy and the pain is less frequent. However, symptoms of the other problems persist and the tissue that is removed seems to grow back unusually quickly in me.
I’ve had four surgeries now, the first two were for symptoms before the underlying cause was identified, the other two were to remove the tissue. It looks like I might need another one soon.
Sometimes it is hard not to dwell on my illness. It is easy to feel a little hopeless and get disheartened when there seems to be no end in sight.
But it’s not all bad. I have supportive friends and family, have achieved various things despite my condition and have a lot to be thankful for.
There are worse illnesses I could have and I am lucky I have access to the healthcare I need. Sometimes I need to remind myself of this. It is easy to forget when I’m feeling particularly ill and can’t stand due to spasms or see due to migraine.
I think I’m slowly coming to terms with being able to understand that there are people far worse off than me without necessarily thinking it means that my problems are invalid and that I am some kind of fraud.
My first serious foray into writing came partially as a result of my illness. Before the cause of my ongoing problems had been diagnosed, I needed to take some time off my university studies. I had always planned to write, but kept putting it off.
My first attempts at writing were a way to feel like I was accomplishing something while all my friends were at uni or working and I was stuck at home feeling terrible without knowing why. That first story sale was a great boost at a time when I really needed it.
I think writing also helped keep me (relatively) sane when I was waiting for a diagnosis and starting to believe that my physical symptoms might actually originate in my mind.
Sometimes I also use pain as a kind of inspiration. Is that wrong? When your body feels like it is conspiring against you, just finishing a story feels almost like a big, well-deserved ‘Fuck you!’ to illness.
On the other hand, my illness is part of why I am not as prolific a writer as I would like to be (who really is?). Some age-old writing tips are not applicable to me. For instance, ‘write every day’ isn’t really practicable when there are days when my head is throbbing with pain and I can’t focus my eyes or stand without the risk of throwing up.
Knowing that I can’t assume I’ll be able to complete a task tomorrow if I delay it today (be it writing fiction, uni work, day job work or anything else) does help prevent procrastination though.
Sometimes, I wonder what my life would be like if I had never been ill. I am quite certain I would be a significantly different person.
Would I have pursued a career as a research scientist if I hadn’t found lab and field work too physically draining? Maybe I would have realised I wanted to be a writer and editor anyway, but it might have taken a bit longer. Who knows? I don’t regret my current path.
I don’t believe that everything happens for a reason. But I try to make the most of the cards I’m dealt. If illness has taught me anything, it is resilience. Writers need a lot of that to keep going.
I will write that novel I promised myself, when I’m ready. And I’ll keep writing short stories in between. But it won’t be to fulfil the requirements of some inflexible promise to myself. I will do it because I want to.
Besides, I think it will turn out to be a very different novel than I expected anyway. I have refined the outline quite substantially since it was first conceived.
Some of the major changes are inspired by my experiences, including one of the character’s own battle with illness and their body not meeting the demands they try to place on it.
I think the book will be better for it. We probably don’t need another stock standard epic fantasy about a chosen one. That is no longer the book I am going to write. Maybe one day I will be able to share it with you.
I thought about this post for a long time before posting it. I wondered whether it was too self-indulgent. On the other hand, maybe it might do a small part to help someone else battling a chronic condition feel less alone. With a little encouragement I decided to share it. Thanks again to those who encouraged me, you know who you are.
Some other authors have talked about chronic illness before. They also partially inspired this post. These include Kameron Hurley and Stephanie Gunn. I recommend reading some of their posts on the subject if you would like more perspectives on chronic illness and writing.
Anyone who knows of any good resources on the subject or would like to share anything about their own experiences should feel free to post in the comments. Thanks for reading.
Header image: Modern Medicine of the Past by photosbyflick.