I feel a  fraud. I look like an average twenty-something, but I can't work, drive or party, and have no formal qualifications... yet.  It's as if I'm still in my mid-teens, which is when  my life changed radically,  slowly coming to a standstill over the course of a year.  I was diagnosed with an illness called M.E. The letters stand for myalgic encephalomyelitis (don't try this without a stunt double for your tongue!)...It's also called CFIDS--Chronic Fatigue and Immune Dysfunction Syndrome.

This awful diagnosis meant that I had to leave school at the age of fifteen and be mainly bed-bound for years. Now that sounds melodramatic because I am so much improved, and eleven years later M.E. is just something  I live with. And I HAVE improved. I learned  how to cope the hard way, now I'd like to help others fast-track..

M.E. is still pretty much a mystery; one filled with controversy and  prejudice. Research helps, though. At least we've progressed from, 'it doesn't exist', through, 'it's a "type" of depression', to M.E. being a disease with unique diagnostic criteria recognized by the World Health Organization. It is now the focus of  international researchers and  medical conferences.

When you've got it, you've got it. Nothing changes if doctors try to sweep you under the carpet, you just become an irritating lump! I didn't understand why my body wasn't functioning effortlessly anymore, why my muscles exhausted so quickly and recharged  so badly, like an old  battery; why I slept so much,  why my head ached constantly, why my guts would go ballistic with nausea and dizziness gatecrashing daily for no apparent reason. 

It was frightening, not knowing, especially since none of the doctors could diagnose anything then and I was  allergic to all their drugs. I'd never felt lonelier, but I battled on..how could I be ill, why should anyone believe how wretched I was feeling when there was nothing to see?

Of course the ideal is an early diagnosis and immediate convalescence. Not knowing any better, I pushed myself hard when I first got sick to completely disprove the accusation of 'malinger'. In hindsight I SHOULD have been *lazy*! The recommendation of M.E. experts is to rest well in the acute stage of the illness because rest seems to promote a quicker, fuller recovery. 

At school I had to leave lessons, miss them entirely, or pass them dozing with my head on my arms - facts and figures whooshed over my head, I couldn't concentrate. A humiliating and maddening problem since I was constantly behind...and in an exam year!

I felt more and more disconnected from people and place. Eventually, I could hardly eat or get out of bed. It was then that my mother found a magazine article about M.E. and the controversy over it. Once I had read the list of baffling symptoms  it was like a Damascene conversion. My huge distress vanished with the last full-stop and when my mother asked, "what do you think?" I  handed it back, saying, "That's me." Let the world fight it out, I thought, I've got a label; the weirdness took a recognizable form, I wasn't going mad. The relief of knowing helps immensely. I could relax, stop fighting, give myself permission to be ill and therefore get well. Denial, after all, was making me no better.

My friends at school were kind and concerned, but because nothing could be explained to them and there was nothing practical they could do it was easy for them to feel perplexed or embarrassed. It felt to me in my abyss as if I didn't exist at all. I wanted to be hugged. That basic.

Fortunately, teachers and most medics were friends to me. At fourteen years old I considered myself strong and independent, in reality I was vulnerable; I did as I was told because I was lost, so I'm grateful to have rarely been at the mercy of disbelieving professionals.

It became harder to keep contact with old friends as they moved on. Gradually I realized that a major part of friendship was sharing experiences, what we had in common was ever distant and we couldn't fill the gap. Those who visited found it awkward, just coming to sit on the bed, talking to someone who never seemed to get well and had no news. Life races in your late teens, and I couldn't race, so it felt like I was getting left behind. Then, it hurt; now I understand that I'm just taking my time arriving.

The friends who remember to look back and wave may be few but they are the best, and I try to think of any losses as vacancies ready to be filled. I couldn't have invented a more stalwart ally than my mother; and in turn, her friends were friends to me too. I became shy of my own age-group for a while because I felt unworldly, somehow unworthy, and unwilling to show my weaknesses. The biggest boost to my confidence was  regaining  peers  through contact with other young M.E. sufferers, some of whom have become good friends. Solidarity sees you through!! Knowing they were struggling along, grappling with the same burden, there was no need to be lonely or self-pitying - it was time to develop a black sense of humour and make the best of things.

After an official diagnoses I was left to get on with it. I spent most of my day in bed and finally learned that if I balanced rest with activity my symptoms would bother me less. A key discovery. Unfortunately, in year two, M.E. hit my head and affected my concentration,  making me forget words and talk hilarious gobbledygook! I also developed a terrific sensitivity to light, requiring the Dracularesque measures of sunglasses and closed curtains....Strange but true! M.E. is like that, it doesn't rest on its laurels; new symptoms  mean inventing new coping strategies --whatever it takes, goes. 

The years ticked by and it became obvious that I wasn't going to be able to finish school. This was one of the worst adjustments; when I left, it was to go away to hospital, not to end a phase of my life. Usually, school is everything: your social network, your calendar, it sets your targets, and you measure your life by it. You are sure to flounder when that goes, even if it's for a short while.

Eventually I could at least read and pick up some informal studies. It was such a challenge to get anything into my porridge-like brain. My short-term memory was shot and intellectual work  physically tired me, so, I paced myself and learned to value anything I could accomplish. Completing small projects or teaching myself new skills (like this voyage into cyberspace, tan-tan-tarraah!!), reassures me that I can achieve, and that  my potential isn't terminally kaput!

Penny-pinching with energy means improvement, though it's never fast enough, of course. Hope is crucial, but it's sometimes tough to maintain...I lectured myself through gritted teeth that others had got through set-backs; if they could, I could, and I  told myself there was sure to be a  high soon.

And here I am, writing this, enjoying some totally inexplicable, surreal but fantastic progress. Moral of the story? Hang in there!

So, has all this affected me for the worse?

I could say, glibly, 'no more than I choose', but there are tender spots, things that make me deeply, deeply sad -  chances I have missed out on so far, moments lost to me forever. That's a ubiquitous hazard in life, though, isn't it, and no-one is immune. While M.E. dogged me to adulthood, it also  opened my eyes, taught me new values of open-mindedness, empathy, and the ability to stand alone. There have been gifts as well as robberies. 

In this boat, or one like it, remember to keep positive images of yourself in your head, and comfort yourself with the thought that, ill or well, everybody has limitations. When something sad, bad, or embarrassing happens, flip the situation right over to see the funny side. If ever your smile muscles give way, smile on the inside instead. Phrase for Today: "work within your limitations, listen to your body", and may The Force be with you!!!

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 14, 2004