A Note to Friends & Family of Those with an Invisible (or Physical) Disability

In the last year two people in my life have temporarily experienced what it is like to live with my invisible disabilities. With one it brought us closer, but with the other it pulled us apart. How you react to such an experience can either help or hurt your relationship with someone like me. If you are friend or family to someone with an invisible (or physical) disability, please read this and take it to heart.

When one person in my life found themselves nauseated, on a restricted diet, and stuck in bed part-time for several months, they quickly recognized they were temporarily experiencing something I live with every day. They commented how it wasn’t fair that their life would return to normal and mine would stay the same. They asked me how I deal with it, and I gave the advice I could. We shared our experiences. We bonded over it. It felt so good to have someone “normal” finally understand. It brought us closer.

When the other person in my life found themselves homebound with restricted mobility for a few months, they complained about the loneliness and boredom to their friends and family. They complained about it to me. I felt bad that they were lonely and bored, but I had a difficult time finding compassion for their situation. It did not click for them that this intolerable, temporary situation was my daily life. I could have helped them find ways to fight the boredom. I could have helped them deal with the loneliness. But, their complaining made me not want to speak up. Maybe it was petty of me not to help, but I felt hurt. Every complaint felt like an insult. In a few months they would go back to their normal life, but I was stuck in it. It felt like they built a wall between us. I felt on the outside, an Other. It pulled us apart.

The next time your life temporarily changes due to health or otherwise, please try to stop and think before you complain to your family, friends, or on Facebook. Your temporary situation may be something your friend or family member with an invisible (or physical) disability experiences every day.

When you complain to us how your situation is the worst thing EVER and you don’t know how you’ll survive, it’s like a slap in the face. We deal with it everyday, and we survive. When you jokingly (or honestly) say that you would absolutely DIE if you couldn’t eat bread/milk/etc. or couldn’t do X anymore and so on, it’s not funny to us. You are basically joking (or saying) that we’d be better off dead than living with our disability. That is no joke. “Physical illness or uncontrollable physical pain are major factors in up to 70% of suicides” and “more than 90 percent of people who kill themselves have a diagnosable mental disorder.” How do you think it makes us feel when you make light of something so serious that we already struggle with?
(Source: Information and statistics about invisible illnesses and visible diseases)

Instead of complaining, talk to your friend or family member or even a friend of a friend. We can be a great resource. We have years of experience with your temporary situation, and we can help. In connecting with us, you’ll find the support you need to get you through and also gain a little perspective on your situation.

We are the PROOF that your temporary situation is tolerable, liveable, and survivable. But, please remember that you are a GUEST in our world. This is our LIFE.

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