One of the more aggravating aspects of having a chronic pain disorder, in my humble opinion, is having to explain it to other people. You see, people don’t “get it” right off the hop – especially healthy people, people who don’t have chronic pain disorders. They don’t “get” why simple, everyday tasks can be difficult for a person living with MHE. I can’t tell you how many times someone has told me “I had no idea! You don’t look like you’re disabled!”
Healthy people, bless their souls, tend to need a visual. They need to see the scars and the bone growths, but even then the severity of it is often lost on them. I had one person randomly blurt out “Extra bones would be cool! You’d be stronger!” Another one thought that I protruded claws like (the original) Wolverine. I’d love to have the ability to protrude bone claws like Wolverine. Sadly, that is not the case.
As I child and teen, I loathed it when I stood out because of my MHE. I would hide behind layers of clothes and never talk about my disability to anybody but my closest of friends, but even then I didn’t explain it completely. I wasted a lot of years just hiding because I didn’t know where to begin on explaining myself, and also because I resented the fact I had to. Healthy people are not asked things like “why are your legs shaped like that? What’s that huge scar from? Why are you walking with a cane/crutches?” They don’t have their yearbooks signed with “wish we’d gotten to hang out more, crutch girl!” or “nice seeing you – when you were HERE! LOLZ”.
If I’d been more open about my disability and about my struggles, I’m sure [most of] my peers wouldn’t have felt the need to make a joke about my absences or need for walking aids.
However…it can be incredibly difficult trying to explain MHE and what it’s like living with it to other people. I’ve always struggled with explaining this disorder affectively. I used to get angry when people didn’t understand what I was going through, but the fault was mostly mine. I wasn’t explaining myself in a way that someone with no health issues would understand. If you don’t explain yourself, people can’t understand. Then, I discovered The Spoon Theory, written by Christina Miserandino. She effectively explains what it’s like to have a chronic pain disorder in a way that is easy for us to relay and easy for others to comprehend.
Having that information to combat the curious questions of strangers and acquaintances has made that whole encounter a little easier on me. I still don’t like being asked about my disability, especially if those are the first things someone is saying to me. I would rather somebody introduce themselves and give me a little insight on who they are, before they start asking me questions about my bumps and scars. Why? It’s simple: we want to be seen as more than our disability. We want to be seen as humans. Maybe, we want to be complimented on our rockin’ sense of style (okay, I’m not talking about me here, I have no style), or how well behaved our kids are.
But…it’s human nature to be curious about things we don’t understand, to ask questions and seek more information. I learned that by being rude and brushing peoples’ questions off, I wasn’t helping myself or my children. So, I’m trying this new thing where I don’t assume the worst of people, and I answer their questions as honestly and truthfully as I can – and I’m finding that it’s really helping.
Conversation is key; but it’s totally acceptable not to answer someone’s questions if they’re being rude or invasive.