I Want To Live in an Arthritis-Friendly World

Do you ever feel like you live in a world not built for you? I do.

Recently, I've felt this way about a hefty door on my commute. It takes a lot of force to open and immediately swings shut; I find it painful and tiring to handle. Others have complained and had a handyman look at it, but it's remained in this state for months.

On days when I'm feeling particularly sore or fatigued, the door doesn't just feel like a physical barrier. It feels like a reminder that many things in the world weren't built with accessibility in mind, and it makes life so much harder for people with disabilities and chronic illnesses, such as psoriatic arthritis (PsA).

Living in a world that isn't arthritis-friendly

There are too many heavy doors and places that mobility aids can't easily enter.  I realize that these issues can't be fixed overnight: it's expensive and takes time to make so much change. However, these struggles for the chronically ill are not limited to the physical world.

While students with juvenile arthritis are entitled to accommodations, school systems sometimes fall short. The workforce can be even less understanding: while employees are entitled to reasonable accommodations, it can be difficult to justify your need. Many people hide their chronic illnesses for fear of being discriminated against.

Even the healthcare system doesn't feel built for us. There aren't nearly enough healthcare professionals, and we have a dire shortage of pediatric rheumatologists.

Some of us have become victims of medical gaslighting and suffer needlessly. Even when doctors are understanding, our health insurance plans can make it hard to start the right treatment.

Having to adapt

When I was first diagnosed with PsA, I remember loved ones suggesting different tools. I quickly had a lovely collection of grips for my pencil, jewelry with magnetic clips, and other helpful gadgets. There were so many different ways to make everyday tasks easier.

After all these years, I'm tired of always having to adapt. Of course, there will always be things I approach in a different way, like needing slip-on shoes when my cankles don't fit in anything else. But I shouldn't always have to suffer in silence to access these greater things like education, healthcare, employment, and the world in general.

There have been improvements

The good news is that things are starting to move in the right direction. I've noticed that things are slightly more accessible than they were ten years ago. I know that advocacy efforts are to thank for that.

It's not about catering to the needs of a few; we all benefit from accessible design. Consider how a wheelchair ramp would also help a parent with a stroller or an elderly person who feels unsteady.

People are a little more aware of invisible disabilities these days. While things may not be perfect, more people are there to hold open the door.

There are more opportunities for students and employees to learn and work in alternative ways, such as online and from the comfort of their homes. Sometimes, someone over the phone can rectify your insurance issues. I'm so grateful for all these things.

Keep moving in the right direction

I'm hopeful that life will continue to become more accessible if we continue talking about these issues instead of quietly dealing with them.

To this very day, no one has been able to fix the heavy door. While I've found easy ways to deal with it, like using my forearm to push it open, it's still tiring.

But today, someone put down a doorstopper to make it more accessible for everyone- and I thought that was pretty great.