Chronic Illness, accessiblity, etc.

 

I am suffering from my chronic illnesses a lot right now. Work continues to be a huge stressor, taking a huge toll on my health. It is so busy at work now I don't even get a chance to take breaks most of the time. I leave work in horrible pain and it hangs around for the entire time I am not scheduled to work. Then I am still hurting some when it is time to return to work. The pain hardly ever stops anymore just lingers around in varying levels of severity. That's pretty much the definition of fibromyalgia pain, I guess. My job is terrible for my fibromyalgia with their assistance on standing your entire shift and not sitting down or taking a break so that customers never have to wait and the hotel never has to look bad or something. They really believe my having a chair at the front desk makes them look bad, when really what looks bad is me walking like an extra from The Walking Dead, leaning over the desk, near tears from my pain, and doing my job very slowly because I am hurting that badly and am in desperate need of a break. I work myself that hard and push myself past my limits because if I don't I get into trouble which just causes my fibromyalgia and plantar fasciitis to flare up even worse than it already was.

The fact that many things I need are hard for me to get, or have barriers in the way of me getting like my accommodations at work makes me think long and hard about the accessibility of treatment, protections, and accommodations for those with chronic illnesses. Because our illnesses are "invisible" people believe we are exaggerating, faking, overreacting, or using them to get out of things. Because of their unpredictable, ebb-and-flow nature people think that we're just being hypochondriac or something. This keeps us from getting a lot of the things we need to help us function in a world not designed for us. There are also barriers to treatment like a lack of transportation, as in the case when, like me, someone doesn't drive and there's not a bus to the clinic area, they can't get a ride, and the Uber/Lyft/taxi price is prohibitively high. Another barrier is the cost of treatments themselves, such as medications, physical therapy, massage, acupuncture, etc. Medical insurance/lack of medical insurance is a big barrier to people getting treatment for chronic illnesses. I think that think biggest barrier is people's attitudes about chronic illnesses. People think they are fake, all in our heads, not as bad as we're saying they are, and many other things because they can't see them. Chronic illnesses don't have an X-ray or blood test that you can see them on, there's typically nothing on the outside of us that indicates they exist.

The worst part of chronic illnesses is that last, other people's attitudes. That idea of if I can't see it, it can't be a thing. The fact that we are medically gaslit because the doctors can't grab one test and point to it and say "There, it's a positive chronic illness test" It doesn't tend to show up on MRI or X-ray, it doesn't really show up on blood tests and you can't do a nasal swab and get a result like you can with the flu, you can't biopsy it like a tumor. Because doctors don't understand it and can't see it on tests they automatically default to "It's all in your head, You're being a hypochondriac, I can't see anything so nothing can be wrong, etc." They gaslight patients and tell them things like "It's because you're carrying around too much weight, it's hormonal, if you exercised more you wouldn't be so stiff, etc." Many patients take years to get any sort of treatment, let alone the proper treatment, and even then it's not like the issues just automatically stop. Sometimes the first things you try don't work and you have to try others. It is a horribly lengthy, painful, and stressful journey to get chronic illnesses to any sort of point where they aren't unbearable at least some of the time. To even get to a point of "better" is a long, hard, slog. And even then things don't keep working and you then have to shift gears and try something new to get back to better again. Bad attitudes just make it a million times worse and need to be either changed or kept to themselves. Those of us with chronic illnesses go through enough.

There needs to be more accessibility to treatments, accommodations, and tools for people with chronic illnesses because they are costing the entire country huge amounts of money in missed work days, lost wages, urgent care, and ER visits. It is causing far more suffering than there needs to be. And if more people had access to the things they needed to make living and working easier, productivity would be higher and there would be fewer people leaving jobs because they couldn't get the accommodations they needed to continue working, and using tons of sick days trying to cope with the impact of their jobs on their chronic illnesses without these tools they need. So many more of our lives would be so much better if we just had access to the help and tools we need to live well.