My Chronic Illness Does Not Make Me Your Back-Up Plan

“Oh yes, on Tuesday I don’t have anything. Let’s drink wine and watch that new Pixar movie!”

“I’ll totally watch binge watch ‘House of Cards’ with you this weekend!”

Tuesday comes, and my friend or partner tells me they are grabbing drinks with someone and excitedly rushes out the door. I sit there confused because I thought we had plans. Sometimes there is a strange offering of an explanation before they go, but more often they leave without even acknowledging we ever had plans.

It happens over and over. I become the back-up plan because of my chronic illness. I’m the plan people have if no one else wants to do anything Friday night or if they are too tired to go out.

What people fail to realize is that they were my only plan. There are so many days when I can do nothing more than watch a movie and cuddle. When my healthy loved ones say they are going join me, I remember. I am excited to finally have company in this lonely struggle. I finally have something to look forward to in their company.

It hurts to realize to them I am the back-up plan. Easily changed and forgotten. So easily forgettable when the promise of their company was beyond unforgettable to me.

It is already a struggle to maintain relationships. I have to find people who are willing to hang out in a low-key setting instead of always going out. Even when I find people who understand that not every hang-out will be an outdoor adventure, it is a struggle to find people who take your plans seriously.

Staying social with a chronic illness seems impossible. I’m either branded a flake or have my plans not being taken seriously. It is no wonder socializing is such a struggle with chronic illness.

What can you do to help? Take plans you make with everyone seriously. Don’t treat your chronically ill friend as a back-up plan.

 As seen on The Mighty.

Playing Pokemon Go as Someone With a Physical Disability

Pokemon Go is a new game that came out this past week and has already become a sensation with 15 million downloads already. The game encourages players to get out, get up, and get moving. The more a player walks around, the more gear they get, Pokemon they catch, the faster they level up, and the faster their “eggs” (containing rarer Pokemon and gear) hatch.

 

I didn’t play Pokemon as a kid, but I downloaded the game when my friends started raving about it. I quickly realized there would be problems once I began to play: it was designed for people without physical disabilities.

The first night I played the game I limped to the park with my friends to catch Pokemon. Due to postural orthostatic tachycardia syndrome (POTS), one of the conditions I have, I had trouble catching Pokemon. At least for a beginner, the game required standing still in place to catch Pokèmon. I can’t stand still for long or else I faint, but sitting down and standing up over and over again wasn’t an option either. I quickly began feeling badly as my friends bounced around easily succeeding at the game.

The second day I played Pokemon Go I ran into another problem: the game requires a lot of walking. I have Ehlers-Danlos syndrome (EDS), so walking a lot often means popping out or dislocating joints or walking on recently dislocated joints. The game is fun for sure, but little is worth that level of pain. I began to play a lot less while my friends went on multiple walks a day and left me behind in the game.

Wanting to play and frustrated by falling behind, I tried using my wheelchair. I thought surely it will fix both my problems (standing and walking). However, playing in a wheelchair offered its own struggles. I couldn’t wheel and catch Pokemon or go to PokeStops the way my friends who could walk did so. I also couldn’t get to all the things I needed to in grassy areas or up steps. My friends offered to take my phone to these areas, but I wanted to play, not watch them play for me.

It makes sense why they released the game in the summer, but it has raised another problem for people like me. I cannot play most of the hours others can. Even in a wheelchair, I cannot go outside in the summer heat without fainting or severe symptoms, so I have to wait until dark when it cools off to play. When everyone around me is playing, at least during their lunch break, it just leaves me even farther behind.

I haven’t stopped playing Pokèmon Go and will probably continue to play. It is an enjoyable game and is doing great things for the average person who needs more exercise. However, the game definitely feels like it was made without people with physical disabilities in mind. Being left behind by my friends in the game is frustrating and will continue being so because the playing field is not even close to level. No matter how great I am at catching Pokemon, I can never catch up. It is so frustrating to always be behind for reasons I can’t control.

One of the worst parts is the able-bodied people attempting to tell me I should be able to play with no problems. Many convince themselves the game is fair and that a wheelchair or physical disability should not change game-play.

People with physical disabilities are telling a different story. People are feeling left behind, no matter the extent of their limitations. I hope the developers of the game listen to those of us who are actually affected and make changes so the game is fairer and more accessible to us all.

Also found on The Mighty.