My Personal Fibro Letter

Dear loved one,

By now you probably know that I suffer with fibromyalgia and that it impacts my life in such a way that I am no longer able to work or live my life like I used to. You may think that I am just lazy because I don’t do simple things, yet I look completely fine. I do look well…because my illness is invisible. If you could see my pain, you would think differently. There have been many times I’ve wished that my illness was visible because the judgment from others, especially close family and friends, can be soul crushing. 

If you think back quite a few years, you may remember how active, hardworking and outgoing I was. I had a hectic job with crazy long hours that I loved and I got to work with lots of different people and face new challenges everyday. I would spend my spare time running in the park, doing spin class in the gym with my gym buddies or in the pub with my drinking buddies! I was non stop for a long time and I loved it! 

Problems with my legs got worse and I had a heavy limp that would switch legs every couple of months or so. With my job being so physically demanding, I decided to enroll at college on a complementary therapies course. I was hoping that I could eventually start a new career with a slower, less demanding pace that would ease the pain in my legs. I started working less hours at my job so I could start another job in social care with patients of dementia and palliative care. I wanted to help others and maybe incorporate some of my new skills from college and help them to feel relaxed. 

Nobody could ever call me lazy. I didn’t stop for anything. I loved my life and was all about having fun and doing my best with everything I was faced with! 

During my time at the care home, my pain got worse and I would get dizzy often. It all got too much for me one night when I was helping a patient and my leg collapsed beneath me. Luckily, the patient was fine but was a little shaken at the thought that something bad potentially could have happened. I knew then that I couldn’t continue with this line of work and got a job on a beauty counter. I loved the girls I worked with but little did I know, these would be my last colleagues for the foreseeable future. 

There were a lot of hours in the day spent being stood on a hard concrete floor, not really moving far from the counter. It was hard on my legs but I adjusted and managed it. Running and spin class eventually became a thing of the past as all my spare time was spent resting my body after each shift and preparing for the next one. 

It got more and more difficult for me to manage as the pain continued to increase and new symptoms developed over the next couple of years. I was on a large concoction of medication, I was exhausted constantly, I’d always be sneaking rest breaks in the ‘spa rooms’ when they were free, just so I could get a few minutes to sit and close my eyes and I had numerous meetings about which adjustments could be made to help me. I was off sick for a few weeks at a time so my body could recover enough for me to carry on; but eventually I was having more time off than I was spending in work. I was asked to visit the company doctor in London for an evaluation. He went through everything with me and wrote a letter to the company informing them that no more adjustments could be made and, as my symptoms were getting increasingly worse, I would be having more and more time off sick. I tried going down to part time hours which lasted a few months but even getting through shorter and less days became unmanageable. So, a meeting with my manager was arranged and she made the decision to terminate my contract on the grounds of disability. 

I was devastated. It took a while for it to sink in and I had no idea where to go from this point. I was so adamant that all of my hard work, dedication and ambition would pay off one day and I’d be successful in a job that I loved! I felt like a failure. I still do. 

I really tried my best, over a long period of time, to manage my symptoms and keep them under enough control that I could still live my life to the fullest. Changing careers, working different hours, working different days, making adjustments, trying medications and just sheer determination couldn’t keep me in work. My full time job now is my health and still enjoying life when possible. So, next time you think I’m just too lazy to work, think back to who I used to be. Remember the girl who never stopped, the girl who didn’t see failure as an option. Maybe then you will think, ‘this girl is so strong to deal with chronic and invisible illnesses and still have a smile on her face!’

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