My Hidden Life as a Woman With Fibromyalgia

I was always a happy, fun-loving person who liked nothing more than spending time with my friends. However, that changed in the summer of 2005. I was admitted to hospital with abdominal pains, and the doctors could not figure out what it was. Seven long weeks later, and still in the hospital, it was decided it was my gall bladder — it had to be removed.

I had the operation, and the pain was gone. At last I could get back home to my 18-month-old son and 3-year-old daughter, as well as my ever-supportive husband.

Two weeks after coming out of hospital, I started to feel unwell, pain in every area of my body, and the exhaustion was like nothing I had ever experienced. Fortunately I had an understanding general practitioner who referred me to the hospital specialist.

As I entered the specialist’s office, I expected an explanation about post-operative fatigue, and I would be just fine in a couple of weeks. Instead I was told I had fibromyalgia, it would never go away, and I would have to learn to live with the pain and fatigue.

I felt like my world had stopped. I was 31 with a young family, yet I suddenly felt old and scared.

I tried, for a while, to continue my life as it was before. I saw friends, went to playgroups, smiled and said I was fine. However, I couldn’t keep up the pretense. I started to make excuses, “I can’t go out, I’ve double booked,” Sorry, the children aren’t well,” etc.

I decided to tell a few friends what was really the matter. I thought surely they would understand, but I was wrong. I was told everyone’s in pain and everyone’s tired, and that I just had to “get on with it.” I could not believe the reaction. So from that day on, I didn’t want to tell anyone about my daily struggle. Instead I decided to re-train as a teacher. So with two young children and my pain, I started my training. I loved it; it helped me forget the pain for a while and gave me a goal. An added bonus was that my friends on the course believed me when I told them I had a chronic illness, and they helped and supported me.

In 2010, I qualified as a primary school teacher and got a job in a lovely school. Work was hard, and I was in constant pain, but the children gave me something else to focus on.

Then one year later, while away with some friends, I fell and damaged my coccyx. The pain was awful, but strangely it was not only in my back, it was all over my body. I went back to my general practitioner, who told me I had a major flare-up of fibromyalgia due to the trauma.

Once again I told friends of my pain and fatigue, and once again I was told how everyone is in pain, and everyone is tired.

I have now been having regular spinal injections, and I take pain medication, but I am leading a double life. People see the me who works hard, never really says anything about my health, listens to others as they talk about being tired, exhausted and fed up. But my reality is different. I wake up each morning with pain that runs the length of my body. The struggle to get out of bed is exhausting. I sit and brush my teeth because I do not have the energy to stand. By the time I get to work, I am not only exhausted, but the brain fog is already setting in, and I am struggling to remember everyday words.

The next six and a half hours I spend with my wonderful class, which helps me forget my pain. My students laugh with me when I tell them I can’t remember words because I am old, or if I get stuck in a chair and can’t stand up. But all too quickly the day is over and I wave them off. Then I sit alone in my class and wonder how I can possibly get through the next five hours of work.

Later, I sit with colleagues as we mark and plan for the following day. They are all telling me of their lives and how they struggle to work and see friends, how they are tired and have headaches. I listen but tell them nothing of my pain, my brain fog and the constant fatigue. I go home, fall into bed and hope the pain medication works so I can sleep.

I stay here in my lonely world. In my experience, if I tell people how I really feel, they don’t understand, don’t believe me or don’t care. Would I be the same if I didn’t have fibromyalgia? I’m not sure. But just occasionally I look back at my life and think, despite the constant pain, brain fog and exhaustion, I trained to be a teacher, I have looked after my family, and I held down a job. I have achieved so much, and yet I wish more than anything I was not so lonely.

I would like to make people who do not know what fibromyalgia is, or who have had no experience of it, know what we have to deal with every day. For those who have fibromyalgia, I would like to know if anyone has had a similar response from others like I have had.

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