When I bumped into a former colleague who told me I was looking well I had mixed emotions. I don’t want to seem ungrateful (in fact these days if someone thinks I look ok enough to mention it, then I’m delighted!) However, thanks in part to the government’s welfare reform agenda, and certain sections of the media who have cast doubts on the validity of those of us with a chronic illness or disability, when someone says, “You’re looking well”, what we sometimes hear is, “You can’t be that ill” or, “You’re faking it”. Paranoia? Probably, but I have multiple sclerosis and many of the symptoms can’t be seen. You can’t see pain, burning, vertigo, nausea, numbness, vision problems, muscle weakness and fatigue. However, this doesn’t make them any less debilitating (think your worst hangover combined with transatlantic jet lag after a 10k run and a spin on the Waltzer with bad sunburn and you begin to get the idea!)
I’ve spoken recently to people with other chronic conditions like Crohn’s disease, ulcerative colitis, lupus and heart problems. All can cause significant physical symptoms, but with very few outward signs of how the person is feeling. There is no sling to see or plaster cast to sign. It is difficult for people to understand why we can’t do something when we look ‘well’ and sometimes we feel people don’t believe us. The main symptom in common for all these conditions is fatigue and it’s more than just being tired. It is all consuming and can come on without warning. You can wake up after a good night’s sleep barely able to get out of bed.
You can have a shower and then not have the energy to get dressed. Arms and legs can feel so heavy you can hardly lift them, you can’t think straight and sometimes you don’t even have the energy to speak. You can put so much effort into cooking a meal that you don’t have the energy to eat it. When it comes on so suddenly, it’s like my old mobile phone, where the battery would show 50% and then drop to 1% just as I needed to make a call, with no warning and no charger available!
I’ve also noticed a worrying increase in the number of people, particularly strangers, who feel they have the right to comment on other people’s appearance and situations, too. They think it’s ok to comment on weight gain or loss, whether someone ‘deserves’ a disabled parking permit or why someone isn’t working... like it’s any of their business!? I know there are a small number of people cheating the system but generally if you see someone using a blue badge to park in a disabled bay it is because they have been assessed as needing it, so even if you can’t see a wheelchair or a walking stick it doesn’t mean they are not eligible. If you see a person who you know has a chronic health condition out and about it’s probably because they’re having a ‘better’ day (or even just a ‘better’ hour) and they may well have been resting all morning just to be able to manage to meet a friend for coffee or a trip to the shop. You won’t see them on a bad day, because they’ll be at home. Probably in bed.
It’s all about appearances. My make up bag and hair straighteners are a godsend and I can make myself look fairly presentable in 10 minutes with a bit of slap and freshly ironed hair. However, for me to go out, even to the local shops, takes a huge amount of effort and planning. If I have something to do in the morning I will try to make sure the rest of the day is clear, if I have something to do in the evening I will try to keep the days either side free. This isn’t always possible, but that’s the plan! However, sometimes I just don’t go out. The combination of symptoms on that day are just too much and I have to stay at home. Every day is a struggle. Sometimes every moment of a day is a struggle. I am never symptom free. They change, they morph, they come, they go, but never leave entirely. Sometimes they are a nuisance in the background, other times they are all consuming. I never know how I’m going to be on any given day and I have to try not to let that bother me. I have to plan things regardless and keep my fingers crossed that I will be well enough to do it.
Occasionally I plan something ‘big’. Maybe a gig or a night out with friends, but I turn down many more invitations than I accept. I don’t do a lot of the stuff I would love to do, often deciding to wait for the DVD rather than go to the cinema to see a film. I make that choice and that’s ok , because I can choose to give up and do nothing, or I can try to make the best of things. It might be a scaled back version and it won’t necessarily have the travel or the dancing that I would’ve liked. However, it will have the bits I can do. The occasional concert, the catch up with friends or going to the football. All planned with military precision to minimise the after effects, but enjoyed all the same.
People with chronic conditions don’t want pity or sympathy but an understanding that if we are out and about it probably won’t have been easy and if we turn down an invitation or cancel last minute, it’s nothing personal!