Community: Real Life

The effects of Passover


Anna

16-year-old Anna tells us how life is as a teenager with Myalgic Encephalomyelitis (M.E.).
Entry: 3

Anna is celebrating Passover, but her M.E. still manages to hold her back from the festivities. Here she explains how the side effects of her condition affect her life.

This past week has been Passover, which celebrates the freedom of the Jews, as slaves from Egypt. It can be an excellent festival full of good songs, delicious chocolate brownies (thanks mum!), and a chance to see family and friends. However there is one big problem for me - the food. On Passover we can't eat leavened bread and the grains associated with it (wheat etc.), but we can eat matza (unleavened bread) as it is what us Jews ate when we escaped from Egypt thousands of years ago. Matza is very hard to digest especially if you are intolerant to gluten (gluten-free matza exists, but you can't tell the difference, taste wise, between the matza and the cardboard box it comes in). I am gluten-intolerant; it is just one of the many "add-ons" that come with M.E..

Another "add-on" to M.E. and all long-term illnesses is the depression that comes with being ill for a while. I thought I'd use this entry to deal with the mental (yes I am crazy!) aspect of being ill for such a long time. In the M.E world the mental side of the illness is a stigma. For ages, people, especially teenagers, with M.E. were dismissed as having a phobia of school, being depressed, not wanting to get better (stories go round about how old doctors threw their patients in a swimming pool to make them swim). Some parents were even accused of Munchausen's by proxy. This has now been disproved but it is only in the past few years that M.E. has been classified as physical, and only this year that it was shown to be purely neurological by the British Medical Journal (some big book doctors use!).

I had been getting increasingly depressed as I was not improving and, being one of those "high achievers", I was getting very demoralised at the constant set backs. It was the beginning of 2003 and I had been ill for two-and-a-half years. I didn't tell anyone and put on a 'happy face', as I hated people to see my pain. When I had the promise of seeing a specialist in M.E. I began to feel more optimistic as I felt that this person would make me better.

"I was alone and lost and although I hadn't heard of self harm before it was how I tried to cope."

I was going through a hard time when I was admitted to the hospital for treatment by the specialist. I was miles away from home and I had the prospect of losing two grandparents as they were both extremely ill. I'd been promised lots of physio as part of my programme but received only a few, very humiliating, days worth (trying to stand but instead falling on the hard floor). I was laughed at, told I was argumentative, and made to feel like it was my fault I wasn't improving. I was also taught relaxation methods, but when I couldnt grasp the concept it was decided that I must be depressed. They put me on a drug I now know to be the controversial antidepressant Seroxat, from then on it was downhill. Now I wasn't just depressed because I was ill or because I was treated like an idiot, I was becoming depressed because of this so-called 'medicine'.

I started scratching myself subconsciously, making myself bleed. This added fuel to the specialist's fire. I was alone and lost and although I hadn't heard of self harm before it was how I tried to cope. The way they saw it was that I was harming myself therefore I must be mental. I was told that I should go to a psychiatric hospital, but when I challenged them to get a psychiatrist to assess me they declined. I was completely distraught; here I was thinking that I had my big chance of a recovery and I was being ridiculed, drugged up and made to feel useless. All I wanted was to get better but this haven was turning into a hell.

When I got home two months later I researched Seroxat on the internet, came across this bbc article and decided to stop taking the drug. After the withdrawal symptoms of cold sweats, shaking and faintness I began to feel better. I felt less down, I was back with my paediatrician who believed in my illness and we started to talk properly about how my M.E. affected me. The thing was although stopping the drug eased the depression and the harming, I had now found a new method of coping. It wasnt long before the trauma of the hospital, the continuing decline of my health and the loss of being a teenager began to take its toll and I began to hurt myself more often, and this time it wasnt because of a drug it was because I was spiralling into the pit of very real depression.

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