From within my glass cage, I watch as people look at me and see nothing wrong. But there IS something wrong, something horribly wrong. Beyond the barrage of physical symptoms, there lies a minefield of emotion that scares me even more than the physical symptoms do.
As well as creating invisibility - the true me not being seen by others - this illness has had a dramatic impact on my life, hugely restricting activity, almost costing me my job, which I'm hanging on to by a thread, decimating my family and social lives, and taking away my body’s ability to function as it should, or anything like it should.
And this invisibility can lead to other issues for the CFS sufferer.
Being distrusted and disbelieved has a major influence. Not only do sufferers have to deal with a multi-dimensional illness, they also have to contend with the fact that many people, including doctors, dismiss them as being psychologically challenged, or just plain lazy.
Sufferers need a proper personal and socially acceptable diagnosis because the confusion surrounding CFS results in low self-esteem, making them psychologically vulnerable, which is NOT the same as being psychologically challenged. They do not want to be categorized as having a psychological illness.
Yes, CFS sufferers can be subject to tearfulness, anger, frustration, anxiety, panic attacks and depression, but these things are a common feature of ANY chronic illness, especially when the patient has no meaningful medical diagnosis to explain their very real and very many PHYSICAL symptoms.
So, yes, psychological issues CAN become part of CFS, but it can be difficult to accept them, or understand them for what they are. Early signs might be low motivation or a lack of interest in things that used to matter. You may then become extra tearful or irritable etc, but with no understanding of why, or knowledge of the fact that extra help is needed.
But these signs should be taken as a warning that you are developing psychological issues. Hopefully, family and close friends will be the first to notice that something is wrong and point this out to you. If they do, please listen.
Like any other distressing symptom, these issues need to be addressed as they can severely restrict your ability to cope with CFS because they can exacerbate its many other symptoms.
When psychological issues are apparent, your GP will usually suggest antidepressants as a first treatment, but where these are recommended, be aware that people with CFS/ME are often very sensitive to pharmaceutical medications, so care must be taken, perhaps starting with very low doses on a trial basis.
On a personal note, I tried various medications, and I really did try to handle them, honestly hoping and believing that they would be the ‘magic pill’ I’d been looking for. My GP prescribed every type of antidepressant, but I was so sensitive to them all that he finally gave up and refused to prescribe any more. As an alternative option, he suggested beta blockers. Wrong move! I was quickly taken off them too, for the same sensitivity reasons. All this left me devastated, and wondering what the hell I was supposed to do next. Go cold turkey? Was it really possible to cure CFS that way? Of course not!
My next move was to ask for a referral to the local mental health team, and I eventually received an appointment with a counselor. Based on past experience, I anticipated the usual lack of understanding, and I got it!
Initially, the counselor annoyed me with his irritating talk of depression’s causes, but I stopped him in his tracks by turning things around and asking, “What’s the worst and most lingering illness you’ve ever had?”
“The flu,” he replied, following a short pause.
“And when you had the flu,” I asked, “could you fulfill your daily commitments? Could you cope with the extreme fatigue, the cotton wool head, the aches, the pains?”
“No, I....well....,” he stuttered.
“Imagine, then,” I interrupted, “having those symptoms for three solid years, but twice as severe and with no diagnosis. How would you cope? Wouldn’t YOU be anxious? Wouldn’t YOU show signs of depression?”
For a few seconds, he didn’t respond. Then, bristling slightly, he adjusted his tie and said, “Well this isn’t about me, it’s about you!”
But as the appointment reached its conclusion, he seemed to soften, and when I next saw him, his attitude had changed quite dramatically – he had become an absolute gem.
From then on, he went out of his way to help in any way he could, and for that I truly thank him, as I thank the rehabilitation centre team he directed me to for further help.
The team as a whole were great, but when I first met the chief psychologist, he asked me how long I’d suffered with CFS. When I told him three years, he replied, “Well if you’ve had it that long, why haven’t you learned to deal with it?”
Anyway, I thought, tomorrow is another day, and maybe this horrible nightmare will be over by then. Methinks not, but I live in hope; perhaps one day, eh? But for tonight, I’m not going to enter my glass cage, though I will continue to be my own jailer. My door is locked and I’m within my safety zone. So, I suppose I’m content, and for now, contentment will have to suffice.
But alas, tomorrow a taxi will arrive to take me to work, which is nothing more than an Access to Work Programme. Regardless of how I feel, I will get there because I must. If I sort out my hair and apply some make up, I’ll at least look the part, and my illness will be invisible again – sorted! I will suffer in silence; nobody will know, so there will be no room for disbelief and talk of laziness.
As a final note - please understand the purpose of the ‘glass cage’ if you come across it. It’s not an exhibit. It’s there for a reason.