Keeping my Chronic Secret

Introduction

I rode in a wheelchair at the airport and I was embarrassed. I haven’t mentioned this because I’m still not sure what’s going on. But, over the past few months, my health has been gradually declining. Chronic illness has become my life, now, so it made perfect sense to mention it on my blog. I won’t go into too many details, but I can only function for a few hours of the day. When those hours are over, I lie in bed and watch tv or read books. Sometimes, I can’t even keep my eyes open because that takes too much energy. The truth is that I’m always exhausted and experiencing constant pain or discomfort. This wasn’t supposed to be a secret, I just never felt like talking about my chronic illness, until now.

My mind tells me I’m exaggerating and it really feels like I am. I know there are people who can’t even walk or feel their own limbs. My pain seems insignificant compared to that, but my health isn’t about how other people feel and function, it’s about how I feel and function. I’ve learned that comparing my health problems to other people’s will never help. It will only make me feel alone, isolated, misunderstood, or even wrong about what I’m feeling pain in the first place. I will end up feeling like my health problems aren’t serious enough for me to ask for help. THIS COULD NOT BE ANY LESS TRUE. If you are experiencing unexplained health issues, ask for help and believe yourself. It took people saying over and over again that my health was suffering for me to finally take it seriously. I have a very high pain tolerance so I usually ignore pain, forget about it, and don’t do anything until the last minute.

Taking Care of Myself

I am working to change that, though, to get a diagnosis, accommodations, treatment, and any other help I could need. If you’re curious, right now, I am trying to learn about my chronic pain and possible causes. Because I don’t have a diagnosis, it can be difficult to find solutions that really help but I can still explore different ideas for chronic pain in general. One website that has really helped me is The Mighty. It is a community of people who are open about various health problems ranging from mental illness to chronic pain. I have found many ideas for orthopedic shoes, heating pads, books, clothing, bags, and more that all help reduce my pain, making it easier to function and follow treatment ideas.

Anyways, tangent aside, growing up, I learned that accommodations were a sign of laziness and/or stupidity. To me, accommodations became synonymous cheating and cheating is wrong. This meant I should deal with any pain or difficulty internally so I wouldn’t be cheating by avoiding challenges. This mindset began to change when I received an IEP or 504 plan for my learning disability, Attention Deficit Disorder. I drew new conclusions about accommodations and connected the dots that an accommodation not only helps me, but places me in a more equal playing field with people who do not face the same challenges.

Now, the next part of my acceptance of accommodations came by realising that my having a certain accommodation, didn’t take away other people’s accommodations. Everyone has different needs to function the best they possibly can and some people need a little help and some people give a little help. That’s all there is to it. There’s nothing selfish or wrong about it (unless you are abusing this).

Storytime

Now that I’ve explained all of that, let’s move to the actual story. I had been in Chicago for three days. I’ve stayed up late and walked almost everywhere and this required so much energy that on my way back home I knew I needed a wheelchair in the airport. I’ve only ever seen older people ride in these wheelchairs and I knew they would be slow, but I couldn’t walk anymore. I really hate asking people for help, let alone total strangers. But after walking everywhere for days my pain had increased and I reached the point of having annoying amounts of pain even when I usually wouldn’t. So I had to ask.

As soon as I sat in the wheelchair, it hit me. I don’t look like someone who needs a mobility aid. I have legs that work, for the most part, and nothing overtly wrong with me. Because of my incredibly high pain tolerance and my desire to not burden people, I don’t look like I’m in pain. At first, I felt bad for having even asked for a wheelchair because someone else might need it. However, I know that the airport must have enough wheelchairs for anyone that might need one so I wasn’t actually “stealing” someone’s wheelchair. The whole time sitting in the wheelchair, I felt embarrassed. However, it was worth preventing further pain, injury, and exhaustion that could have caused problems. I do hope that one day, I will not be embarrassed by using accommodations. I also hope that, in the future, finding helpful treatments and accommodations will enable me to function as a human. Maybe, one day, I won’t have to worry about being in constant pain. Until then, I shall embark on this messy journey to better understand my chronic illness.