Since the rise of comments on news websites I’ve seen more than a few asking how someone chronically ill can take holidays, or that they “look well enough to me”. Here’s my story.

Update from 2016

Whatever it is appears to have gone away. I haven’t been affected for over 8 months now. My doctor has no more information, but since it’s gone away there’s nothing more they can do anyway. I’m just glad it’s gone, but now I have more knowledge of what it’s like for people who can’t escape it.

Original post

I have an undiagnosed cronic illness. I’ve been suffering for six months now.

There are no outward signs of any problems, if you looked at me without specialist knowledge you’d have no idea that anything was wrong - and even then there’s only a few signs. I work regular hours, cook and clean my own house and drive a car when needed. Most of the time I’m a “normal person”.

However, some days my body decides to be different. Joints ache, muscles sieze up, my vision and hearing become fuzzy, and my limbs become weakened. At its worst I’m unable to sit or stand and have to take time off work, and stairs become hard to use. As I work in software development anything that affects my vision and ability to type is seriously crippling to me.

I’ve taken so many anti-inflammatories I’ve developed an intolerance to them, I have to take the non-subsidised meloxicam instead of the subsidised naproxen. Frustratingly enough my health insurance only covers subsidised drugs. I also regularly take the maximum dose of paracetamol (1 gram every 4 hours), which isn’t really good for you. At some points I’ve had to resort to codeine to manage the pain, but fortunately this is rare.

I’ve seen two specialists, had many blood tests and had an MRI. Nothing conclusive has been found, other than a slightly raised level of anti-nuclear antibodies. This, along with my symptoms, points to an autoimmune problem, but there’s normally one critical sign I’m missing that points to a given diagnoses.

I’m lucky - I have health insurance partially paid for by my employer. This means I’ve been able to bypass public waiting lists. I know some people get annoyed at this, but personally I don’t see the issue. I’m still paying for the public system through my taxes and I don’t intend to stop, but since I can afford to I’ll lighten the load on the overloaded public system.

That still doesn’t change the reality though, 95% of the time I’m able to do things like everyone else. 5% though I’m barely able to walk around my own house. If this increased to 50/50 I wouldn’t be able to work full time, but half the time I’d be well enough to travel.

So remember, just because somebody “doesn’t seem sick” it doesn’t mean that they aren’t, you’ve probably just caught them on a good day.

I don’t have comments on this blog, but feel free to contact me on twitter .