What it’s like living with a chronic illness at university
“I can do everything you can, but it hurts”
Last year, Shannon was diagnosed with Fibromyalgia, a life-long illness which primarily affects her muscles, making them stiff and painful. Fibromyalgia has no cure and over 200 symptoms, including chronic fatigue, intense migraines and crippling pain which is 5 times as intense as ‘normal’ people experience. “I only get around 1-3 hours of light sleep a night, my body can’t enter into REM. As a result, when I wake up I don’t feel refreshed and it’s more like I haven’t slept at all.”
There are 70 million known Fibromyalgia sufferers worldwide, that’s 3-5% of the global population, although there could be many more unknown cases out there. “Lots of people don’t even get diagnosed because their doctors either don’t think the illness is real or misdiagnose them. For some people it can take years to get diagnosed, and it still took 6 months to diagnose me.”
Shannon has to wear medicated patches to soothe her limbs and takes around 20 tablets a day, and that’s not even including her painkillers, “I’ve had so many doctors it’s hard to keep count and this is the fourth course of medication we’ve tried, they’re talking about putting me on ketamine next which could be fun.” She also undergoes weekly physical, hydro and electro therapy, travelling home most weekends to make her hospital appointments.
If she wants to hit up the SU Shannon can’t take any of her medication that day, (because mixing drugs and alcohol is bad for you) making her groggy and in pain the day after. “I used to think normal VK hangovers were bad,” she laughs, “But when you add in the intense joint ache on top of my usual blinding migraine and fatigue it’s hell. I can still do all the things I used to do, it just hurts a lot more to do them and that’s why a lot of people think I’m faking it or am just being melodramatic.”
Shannon still lives at uni and attends all her lectures, saying that her housemates have been incredibly supportive over the past year. Royal Holloway too have stepped up to help out, giving Shannon her own exam conditions as she can’t sit in the same position for too long and has to take regular typing breaks when the joints in her fingers start to swell. Her lecturers and tutors have been accomodating of Shannon’s condition, and as a registered disabled student she only needs to have 60% attendance.
However, her insurance company are now saying they won’t cover any more of her treatment. The NHS don’t offer some of the treatment Shannon relies on, and what they do offer is not to the same standard as their physios tend to be less experienced in treating Fibromyalgia. On 30th April friends and members of Shannon’s family are abseiling down the water tower in Church Langley, Harlow to raise money for her essential treatment and funds for more research into Fibromyalgia. Their target is £2500, having already reached £430 in the first few days.
This is an unashamed plug, you can donate here: https://crowdfunding.justgiving.com/fibroprincess
“As well as raising the funds, our aim is to raise more awareness about Fibromyalgia as it’s a relatively unknown condition. As May 12th is Fibromyalgia Awareness Day, hopefully each city will illuminate a major building in purple to show awareness and solidarity. Considering how many people it affects it should definitely be more well known.”