Having an Unseen Disability

Greetings, Loved Ones!

I threw my back out on the day after my last post. I'm in pain and have been generally unable to walk for about the past two weeks. I am writing this article from the floor of our apartment where I've had some time to develop my thinking on having an unseen disability. I wanted to share it with someone before I drive myself nuts, so here goes...

As some of you know, I have pretty severe scoliosis. My spine is malformed to the shape of an "S", containing two abnormal, 3D curves that offset the rest of my body. My left leg is longer than my right, my right shoulder is set higher than my left, my rib cage bulges visibly on one side and my hips aren't even; all this gives my body an overall thrawn and off-kilter feel. Now, keep in mind that up to 90% of diagnosed cases of scoliosis are minor enough to avoid both bracing and surgery; unfortunately, I represent part of the other 10%. For this 10%, I dare say, scoliosis can be quite the affliction. (If you'd like to read more on scoliosis, this is a great article (if clicking doesn't work - go to www.scoliosis-australia.org/scoliosis/about_scoliosis.html).

As a matter of fact, I'm going in for X-rays this weekend to have my scoliosis re-evaluated due to how horrible these last two weeks have been. If you wouldn't mind praying for me, I would be so grateful - the doctors will decide whether spinal fusion surgery should be performed. It's a high risk/high reward surgery and I'm hoping it won't be dubbed as the only option for my particular case, especially considering everything that ensued after my last, much more minor surgery here in Australia. So, if you think to, please pray for me.

So now that you know where I'm coming from, here's what I want to say...

My disability is relatively unseen; no one looks at me and thinks "oh - she's disabled, she needs help." In some ways I'm thankful for that because it means I don't have to endure the painful side of attention people with more visible disabilities are stuck with. The down side is that, in truth, I do need help. I have severe chronic pain at the best of times and at the worst (like in these past 6 days), I end up having to lay flat on the floor for up to two weeks. People often say to me "oh yeah, I have a bad back too - I totally feel ya." Now, I love when people try to relate to me as much as the next gal, but someone with the classic "bad back" telling me they know exactly where I'm at seems to me a bit like a person with a broken toe ranking themselves on the same level as a person with a broken femur. Maybe they both can't walk quite right, but the toe guy still doesn't fully "get it."

In the past weeks, I've had several conversations that have exasperated me for precisely that reason. Typically they go something like "Hey, want to go shopping with me tomorrow?" "Actually, my back is out and I'm in a lot of pain. I won't be able to make it." "Oh... Want to go in two days, then? Surely it's not THAT bad." I view conversations like this as the epitome of the blatant disconnectedness between seeing me as someone with a disability and seeing me as someone who just needs a pep talk. And I've wondered if this would be helped by actually wearing my brace again. When I was walking around in a moon boot for my broken leg, everyone was understanding to the point of me having to convince them that "no, really, it's okay, I can walk to the other side of the street on my own" and "that's okay, I'll be fine to stand for ten minutes, but thanks!" Now, granted, that level of incessant consideration can become exasperating, but it still beats the pep talk approach by a long shot.

So all that to say, when we come across disabilities and especially those that are unseen, perhaps we should alter our standard social interaction template and try something like this instead:

1. Let the disabled person decide how disabled they are or aren't -that's not our territory to encroach upon.
2. Seek to understand their experience rather than to relate with your own.
3. Accept the uncomfortable feelings that often come with talking to a person with a permanent physical problem.
4. Resist, at all costs, trying to solve the problem with a pep talk.
5. If you're at a loss for words, try something like: Wow - that must be so difficult. I'd love to understand better if you'd be willing to share more.

That's all I have for now -- or at least, that's all that's safe to permanently immortalise on the internet. Thank you to all of you who have supported me in my wavering health and who continue to do so. You are all so encouraging to me! I will keep you posted after I know what our next steps are.

God bless you all.

Much love,

Anna