When the search for the right doctor turns into the challenge

Story of a desperate woman

At the age of ten I started experiencing problems with my health and body. I remember having pains as a child in my neck, shoulders, upper back and hands.

As time passed, I also started getting pain in my legs. Unbearable pains made it hard for me walk.

The rheumatologist figured that the pains were caused by me having two extra neck ribs. I therefore had physical therapy, hot water therapy and paraffin wax for my hands.

At the age of 16, I was expelled from school because I was struggling with my left leg and because I was suffering from terrible pains in my back. I often had to lay down on the ground in the classroom to make the pain in my back go away.

At the age of 19, I was referred to a hospital for the pains I suffered from. I weighted 105 kilograms at that time. While I was there, I was told that the pains I was suffering were caused mainly by my being overweight. The hospital treatment consisted of a 'Modifast diet' and I was strictly confined to bed. Aside from the fact that I lost 25 kilograms in six weeks, I still suffered from these awful pains.

The doctors concluded that my complaints were due to my being mentally ill and sent me to a psychiatrist. Meanwhile I consulted other doctors, with one of them giving me an overdose of sleeping pills which nearly put me in a coma. I was saved by the fact that the pills fell behind my bed, which prevented me from taking any more of them.

The fact that my pain was “mental” did not stand in the way of me having my gallbladder removed due to stomach pains I had at that time. The two extra neck ribs were also removed then as there was no objection. These procedures never took my pain away and only made me depressed and exhausted.

I kept living the life of a psychiatric patient. I was admitted to a respite home and ended up living in a (guided community). Living in a guided community, no attention was paid to my pain and lack of strength. I had to cook meals for the community when even holding a spoon or knife was a challenge. I had to take strong medication which made me feel like I was losing my grip on life. The psychiatric nurse told me that I would never recover, and that I suffered from a personality stress disorder. I felt like I’d been written off. The prospect of my life was complete dependence on psychiatric treatment.
 
When I was 36, I was diagnosed by a rheumatologist as having fibromyalgia but he never told me so; he told me instead that it was all in my mind.

Because I found living in a guided community problematic, I decided to start living on my own again. When I look back, it was a very sensible decision. Living on my own, I ended up having home-help. I was visited once a week by a house keeper who made me do my own cleaning. She sat while I was cleaning the house. To her mind, I was 'too lazy' to do things myself.

In the meantime, I owned a electric three-wheeled bike, a wheelchair and crutches. I dropped everything I tried to hold. My eyelids were so swollen that keeping my eyes open was difficult and I was incredibly tired. My house was getting dirtier by the minute even though three social workers were monitoring me. When I was crying out telling them about my pain and hopelessness, they still did not understand what I was going through. I was being told that I should not cry because there were more important things in the world.

At the age of 44, I read my medical files and I was shocked to see the lies they contained about me. I decided to stop using my psychiatric prescription. The pills I had been taking only made me feel depressed and fuzzy. Then I met another fibromyalgia patient who listened to me and took me seriously. We talked about the misunderstandings and the various complaints caused by fibromyalgia. I became increasingly aware of how fibro-myalgia was regarded as a form of mental illness. I realised that I had been mistreated.

When I stopped taking those tablets, I started to 'feel' more, experiencing my emotions more and more, which brought me closer to the person I really am. I brought an end to my psychiatric treatment. I also ended the home-help, as it had been offered on psychiatric grounds. I did not continue with the appointments I had with social services – honestly speaking, these had never held a great deal of importance for me The social workers started to threaten me with forced admission to a psychiatric hospital because, in their opinion, I was not be able to do my own housekeeping. I asked for someone to clean my house, because I was not able to do it all by myself. Because I was unable able to cook a meal either, I went to an old people‘s home to eat.

For the first time in my life I was able to lose 29 kilograms in weight, mainly because I ate more healthily, without dieting or being forced to do so. I have not gained any weight in the last two years. My weight has always been a serious problem, but I was never able to do much about it. Slowly but surely, I started to get my life under control. I started to feel more and more confident about myself, and I came to see that being seen as a psychiatric patient was not very beneficial to me. My family doctor was amazed by the fact that I managed everything on my own and by the progress I had made. Friends that I had got along with in the past found that I had changed.

Nowadays I am doing very well mentally: I have become more assertive, active, independent and I do not let anyone tell me what to do anymore. However, the fibromyalgia is getting worse. I have also been diagnosed with Menière's disease, which basically means dizziness and vomiting. My eyes and hands are swollen and I suffer from muscle spasms in my legs. I sometimes do not know how to sit or lay down because of the pain. It now feels like there are bubbles bursting in my mouth; my teeth ache; my bladder (is irrittated, incontinent); my bowels are irritated; and I also suffer from sleeping disorders. Sometimes bruises appear spontaneously, which is not caused by medication. I still suffer from terrible pain these days. Recently, when I was suffering from bad muscle cramps, I felt on to a glass table, and now have five stitches in my arm. At present I am using a wheelchair, a neck-brace and crutches. To ease the pain I am in, I am currently taking 60 mg of morphine a day.

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