Life With Long-Term Invisible Illnesses

This post is a difficult one for me. I would never have written it but for two things:

reading this post from Anne Wheaton and seeing the response to it; and

having to write a ‘realist’ story for university (I’m lost when I can’t include at least one ghost or spaceship) and my flatmate (also a writer) suggesting I write about my illness.

When I was a kid and a teenager, it felt like I had something wrong with me all the time – infections, growing pains, injuries – you name it. I wondered whether I was a hypochondriac or had a lower pain threshold than other people. Ballet classes were a constant struggle. I never could hold up my arms or legs as long as the other girls, despite the fact that I had twice as much muscle. When I was about 15 I had a meltdown in Drama class at school. I’d never had a problem with school and couldn’t understand why it was suddenly getting to me, especially in one of my favourite subjects. I was sleeping a lot, but everyone said that’s what teenagers did, so I didn’t question it. Then I was diagnosed with mild Chronic Fatigue Syndrome. That explained the exhaustion, but not the other things – it was just another problem to add to the list.

Throughout my 20s, continued CFS, disappointed dreams and a boring office job weighed me down physically and mentally. I knew I was depressed, but it went officially undiagnosed. Eventually, I moved countries, looking for a fresh start and hoping to break away from it all.

My new employers soon realised I was struggling and sent me to the doctor. I was diagnosed with Clinical Depression and, after much reluctance, research and deliberation on my part, I was put on anti-depressants.

One thing I’d never done was break a bone (although I did once get hairline fractures in the tips of my toes from pointe work – oops!) I had multiple back and joint problems, though, including regular migraines and some old injuries that felt like they’d never properly healed, and I often saw a physiotherapist. One day, she asked me to lie on my side and I obliged. She gave me a funny look and said, ‘Is that how you normally lie when you lie on your side?’ I said yes, and she made an appointment for me to see her manager. At that appointment, her manager asked me to do some strange things, then asked me to lie on my back, put my arms straight up in front of me and move them up and down. I obliged; she made a funny noise and said, ‘One of your cervical vertebrae moves when you do that. I’m pretty sure you have Joint Hypermobility Syndrome.’ I said, ‘I have what-whatety-what-now?’ I’d never heard of it. So off I went to see the rheumatologist at the hospital and he confirmed it: I had Joint Hypermobility Syndrome. ‘So,’ I asked him, ‘does that mean I’ve been misdiagnosed all these years, and I don’t have Chronic Fatigue Syndrome?’ He said, ‘No. In my opinion, you’re unlucky enough to have both.’ Joy.

The reason I’d never broken a bone was that people with JHS (also abbreviated HMS) don’t tend to break; we bend. We bend way too much. Sounds pathetically minor or potentially awesome, right? Compared to what some people go through, yes, but what it means is that our muscles have to work twice as hard, all the time, just to keep our joints in the right place (which also means it takes twice the effort to do things, including just sitting still). Our joints subluxate very easily, and it’s not just our joints that are uber-flexible; it’s all our connective tissues. That means it affects our internal organs, as well, causing things like IBS. The foremost researcher on JHS is a professor in London who has recently retired, but he believes JHS is actually a slightly lower grade of Ehlers-Danlos syndrome. I have to say, I attended an eight-week pain management course with both JHS and EDS patients, and our symptoms were pretty much identical: pain, exhaustion, injuries caused by stupid things like brushing hair or opening drawers, IBS, clumsiness/spatial awareness problems, sensitivity to cold/heat/noise, inability to stand or sit for long periods, depression, migraines…. Additionally, local anaesthetics don’t work very well on JHS/EDS patients, so to that idiot doctor who cauterised my warts when I was a little kid and wouldn’t believe me when I told him it was excruciatingly painful:

So that diagnosis explained everything. I hadn’t had multiple problems; I’d had multiple symptoms from one illness (later two). And I didn’t have a lower pain threshold; if anything, it’s probably higher than normal, but I’m genuinely in pain 99.9% of the time.

Of course, what all three illnesses – CFS, JHS and depression – are is invisible, and this is the biggest problem: people forget we have them. But just because they’re invisible doesn’t mean they don’t affect us in visible ways.

The greatest effect has probably been to my career. I would have loved to pursue music or musical theatre, but I simply didn’t have the energy or the support I needed to pursue it. So I spent 14 years, which is longer than you get for murder, these days, in a line of work I had no interest in, and that sucked all my energy and left me with none for the things I enjoyed. I was bored out of my brain, and since one of my depression triggers is boredom…well, you can see the problem right there. My psychologist said he believes I have a form of PTSD – not from any one trauma, but from having to spend every day in an environment that so completely clashed with my personality. First World Problems, I know, but you’d be amazed how all the little negative effects add up. Still, I’m the kind of person that does things 100%, even if I don’t enjoy them, but I soon discovered that even that wasn’t good enough. In a corporate environment, it’s all about the mask you put on (which is one of the reasons I don’t get on with it – I like it when people are ‘what you see is what you get’). At appraisals I’d be told I needed to ‘put on a face’ to hide my exhaustion. What they could never seem to understand was that I was already putting on a face. What they were seeing was the spillage. All three illnesses affect concentration, and make it difficult to shift your focus from one task to another. I was frequently told that I looked annoyed when my bosses gave me work. As far as I was concerned, I was there to be given work, and I wasn’t the least bit annoyed, so why was I being told I was feeling something that I wasn’t? Eventually, I worked out that the effort it took to refocus from the task that was interrupted to listening and understanding what the interrupter was saying to me was showing on my face, and they were reading it as annoyance. (I have since found another friend who says their ‘efficient concentration face’ also gets read as ‘**** off!’, so I’m not alone in that.) In hindsight, the effort it took to constantly justify myself and prove that I was working to get better had the opposite effect on me. Never once was I told my work was at fault – in fact, it was often praised; only the way that I looked. When a new manager called me into her office and all but told me she wanted me to quit, not because my work was bad, but because of my illness, that was the final straw. Doing the work and doing it well was clearly not enough. I made the decision to leave, even though it made me feel like she’d ‘won’, and go to university. Still, I got a lot of very helpful medical treatment during that time, so I guess that good can come out of all things. (I want to add that that manager was an exception - most people there were fantastic and a joy to work with; the main problem was the nature of the corporate world.)

I suppose the second greatest effect has been on my social life. Depression has odd effects, like I can get blindly angry at the smallest, stupidest things (although very rarely at my friends, I have to say – usually just at things), and I have occasional memory-recall problems and anxiety issues, all of which affect friendships. Invisible illnesses are difficult because you never know how you’re going to wake up. You could be walkin’ on sunshine or drowning in the rain. You could be full of energy or in so much pain you can’t move. And, as I said, people forget. I can’t tell you the number of times I’ve been invited to something by someone, been unable to go at the last minute because of illness, and never been invited out by that person again. I quite like being spontaneous, but I can’t be. It takes days to prepare both physically and mentally for going out, especially if it’s somewhere noisy and/or without chairs, like a club. When I lived in London, I wanted desperately to go out with my friends and flatmates, but rarely could because I never knew until the last minute what they were doing. When you have an invisible illness, you are painfully aware that you are a wet blanket. Sometimes, you need to feed off other people’s energy just to survive. The weight doesn’t help, either. I don’t care how many times people tell you that looks don’t matter to them; they do. People started treating me differently when I got above a certain weight. But when you need to exercise to lose weight but are not allowed to (and aren’t even capable of it)…what can you do but hide in the back of photos and shop at the old-lady shops?

All of this caused a gradual stripping away of my personality and my confidence. I guess years of doing the best you can and knowing it’s still not good enough will have that effect, but it’s not only that. I can no longer trust my body. I can no longer trust my mind or my emotions. I used to enjoy driving – I found it relaxing – but now I’m terrified to get behind the wheel because I may not see something or react in time, or I may misjudge a distance due to the spatial awareness problem. I have no faith that people actually like to have me around – I’ve been a wet blanket for so long that I’m sure they’re just being charitable. I make a joke and beat myself up for the rest of the day about the stupidity of it. I constantly think of myself as an inconvenience to people, and feel the need to make myself as small and as blank and as invisible as possible so as not to inconvenience or irritate them further. (Although I’m not going to lay full responsibility for that one on the illnesses – some people I’ve known have had a knack for making me feel that way.) I love fashion, but look like a librarian. You can imagine how the downward spiral of depression operates in these circumstances. I’m anxious about the future – how do I go back into a full-time job? What if I end up back in my old line of work? Tackling new things is terrifying. Even speaking on the telephone is an effort in anxiety-control, because it involves thinking on my feet and having to remember things or solve problems on the fly. There have been so many times when I just wanted it all to stop; wanted the world to go away. I’ve not had suicidal thoughts since I was a teenager, but I can tell you there have been several moments when, standing on the edge of the road, I’ve thought, ‘If I was just hit by a car, I could go to hospital and then I wouldn’t have to go to work or look after myself or make the effort to keep up appearances. It would be the best holiday ever.’

I didn’t want this post to be all negative; my intention was to help people understand what it is like to live with an invisible illness (or three), so they can understand when someone they know is in that position. The good news is, things have improved for me since I left the office environment. University has been tough physically and mentally, but I’m so much better off without the boredom. You learn, over time, to deal with the pain, take each day as it comes, and ask for help when you need it (as hard as that can be). But it means living by adjusting and readjusting and compensating and even missing out on things, and that has ripple effects. I may not get to do what I want to or go where I want to; I may react strangely to things; I don’t have the life I want, by any stretch of the imagination. But I do believe it is possible to have an enjoyable life and to do something with it that’s worthwhile, and I do believe there are people out there who genuinely care. For a long time, I didn’t believe those things. I still don’t know what my future will be like, but I have learned and am still learning coping strategies that I know will make it better than the last 15 or so years have been.

Lastly, I just want to say that if you are depressed or struggling with thoughts of suicide or self-harm, please, please ask for help. It’s nothing to be ashamed of. Mental illness is no different from any other physical illness, and it’s treatable.

Things never to say to someone with CFS, JHS/EDS or depression:

‘If you’re extra flexible, why are you so stiff?’
(Answer: Because my muscles are working too hard and/or are injured.)

‘Why do you talk to yourself?’
(Answer: Sometimes it’s the only way I can concentrate.)

‘You always get sick.’
(Answer: Yes. I have a LONG-TERM illness.)

‘Didn’t you just have a nap?’
(Answer: Didn’t you just have a drink?)

‘We’re going out to a club in 15 minutes. Do you want to come?’
(Answer: If you’d told me a week ago so that I could get my head and my body prepared, I would have been there with bells on.)

‘You could always get a job in a bar.’
(Answer: Right, ’cause getting a job where I’m carrying glassware and standing on my feet for hours on end is a great idea.)