This post obviously applies to any long term, invisible illness, but I will be focusing specifically on chronic fatigue syndrome (CFS), as this is the illness I have. Feel free to mention your experiences with CFS or any other chronic illness in the comments.
So, as the title suggests, this post is about the stigma people face due to being chronically ill. From my experience, the stigma can be broken down into three different categories: disbelieving the diagnosis, misunderstanding the symptoms, and constantly expecting the person to recover. There are obviously several more types, but I will be mainly talking about these three, as I have experience with them.
Disbelieving the Diagnosis (Or ‘What do you mean you’ve got that?’)
This is the first type of stigma I experienced. It is often particularly odd, as the stigma can come from doctors, the one group you would expect to understand it. Although from what I have read on various blogs, I am not the only one to have crap experiences with doctors.
I was sent to a neurologist to see if they could do anything for me. The neurologist (who had previously done an MRI scan on me when I was first getting ill to check if it was Multiples Sclerosis) wasn’t interested in me, as my symptoms were not ‘organic’, and therefore he didn’t know how to treat me. He referred me to have therapy, because if my symptoms weren’t organic, they must have been psychological (sarcasm). That made me so angry (this is in no way an attack on mental illnesses, because I am severely mentally ill, but I knew my CFS symptoms were nothing to do with my mental health, as they were completely different), but there was nothing I could do.
Later on, the mental health team were reluctant to take me on for my depression and OCD because of my CFS. They didn’t understand what it was, and thought it would make my therapy more difficult. They keep pestering my GP to get me physiotherapy for my CFS (which is a whole other story; the CFS clinic don’t want to see me because I’m autistic!), because they seem to think my mental health will improve if my walking improves, despite my insistence that the two things are entirely unrelated, and simply happening at the same time. And they don’t listen when I try to tell them that even if I could walk again, I still wouldn’t go out on my own, as my anxiety and paranoia are too bad. But there you go.
I personally have been lucky enough not to come across this specific one yet, but another thing that happens a lot is people not believing you have an illness or disability because of your age. Plenty of people get told they are too young to have chronic illness, particularly those involving fatigue and pain, as if being ill is only something people over the age of forty experiences. I have never understood why people have this attitude, but it can have a detrimental impact on ill young people, as disbelief that someone young can be ill can make it very difficult to find a doctor willing to treat or even diagnose you.
Misunderstanding the Symptoms (Or ‘I thought that was just being tired’)
When I was first diagnosed with CFS, my mum informed the school so I could get accommodations for my upcoming GCSE exams and just school in general. My school were quite good with this, letting me drop two GCSEs and have a part-time timetable, as well as rest breaks and a laptop for my exams, but not everyone was so understanding and helpful.
When I was first getting ill, a few people kept asking me why I was missing school and acting weird (such as walking slower and falling asleep in class), so I eventually gave in and told them about having CFS. Some people just didn’t get what that meant, but seemed to understand when I gave them an in depth explanation. Others, however, used it to make ‘jokes’. My desk partner in tutor joked that he must have had CFS too, because he gets tired sometimes – this was when I pointed out that he was running cross country and playing football pretty much every day, something you can’t do without horrendous payback. But he didn’t listen.
My friends understood that I was tired, but that was all they thought it was. They had no idea about the pains and sore glands and stomach problems, and they certainly didn’t understand post exertional malaise (the thing that happens when a chronically ill person feels much worse the next day if they overexert themself). In March of year 11, we had to sit practical exams for Biology, Chemistry and Physics. They were called ISAs, and were horrible things that took the entire school day to do. So, naturally, this would have exhausted me. My Biology ISA was on the Wednesday, so I spent Monday and Tuesday at home so I would have enough energy for Wednesday. On the Tuesday, one of my friends sent me the following message:
Please come into school, Lizzy. I googled your ‘illness’. It’s mostly psychological. You’ll feel better if you don’t think about it, I’m sure. 🙂
The quote marks were hers. I’m sure she meant well, but that message really upset me. Her use of quote marks implies that she didn’t consider my CFS a ‘real’ illness, and, again, mistaking physical and mental illness really annoys me, as they are not the same thing. I had a massive rant at my mum, who agreed with me, but I never brought it up with my friend; I think I was scared that I might get more ‘jokes’.
When it came to sitting my GCSEs, the school were not allowed to authorise extra time – only the exam boards can do that. So we paid £10 for my GP to write a letter explaining my symptoms and why having extra time would benefit me, but they rejected my claim. I think this is because they didn’t understand why I needed extra time; it wasn’t just because I get tired easily, it was also because my CFS gives me brain fog and it takes me ages to think of the right thing to write and to recall information. I did all right in my exams, but I think I would have done better if I had been allowed extra time.
At sixth form, my head of year had no idea what CFS really was, despite my attempts to explain it to her. She kept thinking I would be less tired if I had a good sleep (I’m an insomniac, but sleep deprivation and chronic fatigue are not the same thing; I told her this, but she obviously didn’t listen), even though I kept telling her sleep never refreshes me, so sleeping for a long time wouldn’t help me at all.
(Not) Recovering (Or ‘Why can’t you understand what chronic means?’)
This one is not as bad or annoying as the other two, but it can get rather irritating and repetitive after a while, especially when the same person needs to be reminded what chronic means.
For example: every time my paternal grandmother phones my dad, she asks if I am feeling better. I know she only means well, but that comment never fails to annoy me, because of course I’m not feeling better since she phoned a week ago – I’m chronically ill!
But when has anyone actually understood what that means?
So, that’s my experience with the crap you get for being chronically ill. If anyone would like to mention the stigma they have faced, feel free to mention it in the comments.