Tired

People don't understand that it takes so much energy that is already deprived, to crawl your way back to your baseline so that you can be semi-fuctional only to be hit with another setback.

On the contrary, the amount of flares we experience wear us down. It's not like getting a flu once a year and feeling perfectly fine in between and having that chance to recover.

A flare would be like having a terrible flu with the worst symptoms you can imagine that never fully subside. You come out of that flare worn out, completely exhausted, and still experience those symptoms everyday.

Then the next flare comes a couple of weeks later, and you're already worn out but have no choice to endure the symptoms and just hope it passes quickly. And this happens over and over again and most often indefinitely.

The cumulative effect of chronic illnesses chips away at an already strained and exhausted body. And I can't even begin to describe the emotional toll this has on us as well. The amount of willpower it takes to endure the constant flares, the symptoms, new symptoms that arise, the endless appointments, the gaslighting, inaccessibility, and not being believed is unreal.

And when we struggle and can't cope, it's not because we're not strong, it's because we have a health care system that is built to cure but not to take care of people with chronic illnesses. We are left to manage on our own, with little support from medical professionals, often at the most painful times in our lives.

Chronic illness isn't about just being sick. It's about everything in between, everything unseen, and the amount of silent issues that pile up on each other that society expects us to take in stride.

Young people can have arthritis too.

There are hundreds of life long conditions and diseases out there that are typically diagnosed between 12 and 30.

There is a vast difference between being tired and having chronic fatigue.

Just because you can’t tell that someone is unwell from looking at them, doesn’t mean that you should assume that they are ok.

Many chronic illnesses are life long, and incurable. Many of them are potentially fatal.

If you have a disease like Lupus, on good days you still feel like you have a bad flu, 24/7.

Many of the medications used to treat chronic conditions have side effects that can really affect someone’s self esteem - like extreme weight gain, skin changes and hair loss.

Most chronic illnesses have very little awareness - its unlikely that you’ve heard of Sjogren’s Syndrome, Scleroderma, Ehlers-Danlos Syndrome or Fibromyalgia.

However these diseases can cause symptoms as varied as joint pain, fatigue, constant nausea, kidney failure, pneumonia, photo sensitivity, full body rashes, paralysis, strokes etc.

I don't want to be strong.

I don't want to be an inspiration despite all of the obstacles that I face.

I want to live in a society where I don't struggle with barriers, am accommodated, respected, and given the care and treatment that I need.

I want to be treated fairly. I want to live comfortably enough to not have to worry about medical bills. I want to be believed by doctors and treated with dignity.

I deserve to be treated humanely.

I deserve respect.

I deserve inclusivity.

I deserve equality.

I deserve fairness.