At first glance, I appear to be your typical millennial – with my facial piercings and tattoos. Look closer and you’ll notice the slight limp, the winces of pain when I move or how it’s a struggle to go up stairs. I seem healthy and happy – but upon further inspection you might start to see the truth of what I go through daily, where even getting dressed can take most of my energy for the day.
I’m 22 and live with several invisible illnesses.
The first one I was diagnosed with was around 7 years old. I remember going into the pediatrics office and into an exam room with pastel colored walls and Disney stickers decorating them. It seemed like nothing bad could happen there. My mother was with me, pretending not to be nervous – but I knew she was scared; we were getting the results of several tests to figure out what was going on with me. I was diagnosed with scoliosis – which was nothing compared to what was to come.
At 19 I was told I had arthritis in the spine. That combined with the scoliosis means that I have constant back pain. There are days it’s so intense that I can’t walk, and laying down is horrendously painful. There’s little that gives me relief. This combination makes walking for long distances or standing for long periods cause pain the following day.
Recently, I was diagnosed with Fibromyalgia. This one hit me the hardest and left me feeling confused and frustrated in the weeks following. Fibromyalgia is the overabundance and over-activeness of nerves. It results in light touch being painful, not being able to move easily, having chronic fatigue, chest and rib pain, memory issues, ‘brain fog’ and much more. It’s a complex illness that affects everyone who has it differently, and there’s no set medication or treatment that’s guaranteed to work.
Because I look able-bodied, I’ve faced a considerable amount of discrimination and judgement. People seem to think I shouldn’t get any special considerations. I’ve had dozens of people sneer and make nasty faces when I sit in the ‘priority seating’ area of buses and trains. Some people even make rude comments and yell at me to move because they think I don’t need the seat.
“It’s incredibly frustrating as someone who’s apparently not ill enough to qualify for disability yet not healthy enough to work.”
I’ve had doctors tell me that my pain is all in my head. They said that I’m just making it up for attention or exaggerating how extreme it is so I can get pain killers or try to ‘game the system.’ It took years of complaining about back pain to my doctor and suggesting possible arthritis before he would do the tests to see if I did or not – and by the time I was diagnosed it was already down the length of my entire spine.
Other examples of discrimination are during job interviews and applications. When employers ask if I need any accommodations in order to perform the job I’m applying for, I’ve learned to say ‘no,’ because if I put the truth, I never hear from them again. I’ve tried applying for disability and was denied. It’s incredibly frustrating as someone who’s apparently not ill enough to qualify for disability yet not healthy enough to work. I need to be able to pay my bills and buy food, but it’s becoming an increasing struggle as I’m turned away from government assistance yet can’t find a job that’s compassionate enough to understand that sometimes I need a bit of extra help.
Even though some days are great and I can do everything I want to during the day – I have unlimited energy, focus and drive – the bad days are what scare potential employers: the fact that I might call in sick one day because it hurts too much to walk, or I’ll push myself at work and get injured and cost them workers compensation. But I understand their concerns, and I don’t blame them for not hiring me based on the risks it would mean.
I also face hardship when trying to date. I end up having to reschedule a lot because I don’t know how I’m going to be feeling the day of. Sometimes I simply don’t have the energy to get ready and leave my house – and when I do anyway, it means that I’m guaranteed to be out for the next two or three days.
Living with an invisible illness is a constant battle. It’s it’s isolating and terrifying at times. But I’m making it work. I’ve managed to slowly build a support network, get my pain management plan as perfect as possible and I’m taking steps to take care of myself and put my health and happiness first.
Self care for me is making sure I don’t push myself too much, learning my limits when it comes to what I can handle and communicate with those around me about what I’m going through and what I need. Building my support network has been a long time in the making, but it’s the key to helping me navigate day to day.
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