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Date published

28 November 2018

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How it all started

I attend a UK university. For 2 years I have been struggling with chronic pain, fatigue, and other issues. Unfortunately, no one has been able to figure out what exactly is going on. These issues affect my schooling. Often classes can run for up to 4 hours without a break. It is very difficult for me to sit in a chair for 4 hours without getting up to stretch, apply pain relief gel, use the bathroom (I have abdominal and pelvic pain and related symptoms) or take a break and clear my mind. When I force myself to sit through 4 straight hours, I crash afterwards, often not remembering much of the lesson and being largely unable to do much for the rest of the day. University disability services could help me greatly with that. They could let my teachers know my situation and ensure that I’m allowed reasonable breaks during long classes to avoid undue pain and fatigue. But because I have no concrete diagnosis, I can’t access university disability services. My symptoms may not have a name but I still live with them daily and they deeply impact my life. Unnamed disabilities are still disabilities and there need to be ways for undiagnosed sufferers to get the help they need.

What I did to try to overcome it

I have tried speaking with disability services but have been unable to get help.

How it made me feel

It’s deeply frustrating. It impacts my education, which is something I care about a lot. I feel ignored and unheard. I already have extra burdens because my disease is undiagnosed and I don’t have effective treatments for my symptoms. Not getting support from the University makes that even harder to handle.

The outcome

So far nothing had changed. I continue to pursue a diagnosis so I can one day receive the services I need.

Final thoughts

Remember that lack of diagnosis doesn’t equal lack of suffering. Those of us without words to describe our disabilities suffer just as much as people with names disabilities, but often in the dark. It’s unfair and unkind.

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S Taylor 8 December 2018

Reply for Marta /Education / 28 November 2018. Sounds like Polymyalgia-rheumatica. This condition has been rarely recognised by GP's in the past and blood tests do not always show this condition. GP's are now becoming more aware of the condition but unfortunately, this condition is best treated as early as possible. Make a request to your GP to be referred to a consultant rheumatologist as soon as possible. If it is PMR they tend to put you on a hogh dose of steriods to get the condition under control. Regards

Susan Oliver 3 December 2018

Reply for Marta / Education/ 28th November 2018 Sounds like Fibromyalgia/CFS to me. Get aappointment with Rhuematologist.

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