If you suffer from Fibromyalgia, ME or Chronic Fatigue Syndrome you will no doubt be able to relate to much of what I am about to write. If you don’t then perhaps you know some-one that does and I hope this article will give you a little more insight about how badly sufferers can be treated by the so-called caring profession and indeed, albeit unknowingly, by friends and relatives.
I’d like to think most of the misconceptions are a thing of the past but sadly I hear too many tales from people with Fibromyalgia or ME to know that this is not yet so.
Mental fatigue is not psychological
When I was first diagnosed I was lucky enough to have insurance. It took a year to get a diagnosis during which time the company wouldn’t pay. Finally the diagnosis was confirmed by Professor Findley, an eminent consultant, and backed up by Professor Yong, an expert in infectious diseases.
You would think this would be enough and I was very relieved when the insurance company declared they would pay out, subject to a visit from their ‘occupational therapist’ to see if they could help me in any way. I was later to learn that they had sent a psychiatrist and if I hadn’t made such a fuss I would never have learned this.
Here are a few of the questions their representative asked:
- Is this your first marriage?
- Why did you ring to see where I was when I was late for the appointment?
- Do you worry your husband might leave you?
- Tell me about this rash you get that I can’t actually see.
- Do you enjoy having your husband looking after you?
- You say you wear loose clothing when the rash appears. What do you do when it needs washing?
Like me, you are probably wondering how any of this was relevant and why the questions jumped back and forth. The answer to that came when they turned down my claim on the grounds that I had a psychiatric illness.
I was totally shocked when I read:
- After the breakup of her first marriage, she is afraid her husband will leave her.
- She feels, albeit subconsciously, that her husband will stay while she needs him.
- There is evidence of paranoia in that she was making unnecessary phone calls regarding the appointment.
- She has an imaginary rash that she feels requires specific clothing.
- She won’t get out of bed unless her favourite frock is ready.
And there was plenty more!
I had seen both consultants recently and the rash had been documented and indeed the high antibodies from the staph infection that caused it. It was an employee that rang about the appointment because she thought I was looking tired and needed to rest. My husband was infuriated that they should question our marriage, never having spoken to him. Incidentally we have now been married 20 years.
Fortunately for me he had got so many facts wrong that the threat of legal action stopped them in their tracks and they promptly backdated the payments.
That worry out of the way, I then got a letter saying my DSS disability payments wouldn’t be paid because the doctor they sent to visit concluded the illness was psychiatric in nature. He didn’t dispute that I had it – just that in his opinion it was all in the mind. I appealed and it was refused on the basis that they couldn’t overrule the doctors opinion.
Luckily a helpful person at the DSS told me it was quicker and easier just to reapply than appeal. That really went against the grain. Tired as I was I really felt the urge to fight them on that but common sense prevailed and I simply reapplied. A very nice local GP had no problems confirming the claim and finally that was backdated also.
During this time I was pretty much ‘out of it’. The aches, pains and tiredness, plus a myriad of other symptoms, meant very little time for socialising. As I started to get a routine together and learned to balance my day, I began to see friends and family again.
Most are sympathetic and understanding but I am constantly taken aback when people expect me to be able to do things that are beyond me or simply not sensible to do as they are likely to induce a relapse.
No matter how hard I try to get people to understand, most still don’t really get it, and it is actually quite hard to talk about. After all, no-one wants to hear about anyone’s illness in depth, especially those you might not be quite as close to.
So if you have a friend or family member with Fibromyalgia or ME, please try and remember that it isn’t something they can ‘snap out of’. ‘It’s only for a couple of hours’ might seem ok to you and they may well be fine for that 2 hours, but tomorrow could bring a total relapse. The balancing act is quite tricky. Please let them control their own well being without being pushed to do more.
And finally, please please please don’t sympathise, telling them you know what it feels like because you had a bad bout of flu once. I think I probably speak for most of us when I say that you really don’t know what it’s like if you can say something like that.
- License: Image author owned
Gail Clarke is a CFS and Fibromyalgia sufferer who lives in Tenerife with her husband and 4 dogs.