Educating Random People about Invisible Disability

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 16th, 2012 • Living with Chronic PainPrint Print

So I decided to say something to the head-banging guy from the party tonight. I found him on Facebook and sent him this message:

We met at the post-Hanukkah party tonight, and I want to address something that came up:

I let you know that I do not shake hands, because I did not want you to take it personally when I did not shake yours. The back story is that I suffered from a decade of chronic and debilitating pain. While I have self-healed from that pain, I still have a very sensitive body, and shaking hands usually triggers pain that can last a few hours.

When I told you I don’t shake hands, your response was to proffer your elbow. When I said, “I don’t do that either,” you made a fist and started coming down on top of my head, as if you were going to bang my head with your first. Not only was that gesture decidedly unfriendly, dare I say bordering on violent, but while you stopped your first an inch or two above my head, the energetic momentum continued. As a result, I ended up feeling as if I’d just been stabbed by an ice pick, and I’ve been suffering from head pain in the two hours since.

I’m feeling upset about and frustrated by what happened. Obviously you did not know about the sensitivity in my body. It is specifically because you did *not* know me or my circumstances, however, that I question why you kept pushing the issue – ie, why did you did not just say “ok” when I said I do not shake hands.

Thank you in advance for your care and consideration of this matter. I look forward to hearing from you.

Loolwa

Here is how he responded:

Dearest Loolwa, I was kidding and trying to be brotherly. There was no energetic momentum and your headache is probably the result of you thinking about it to much. I have no violent tendencies nor any desire to hurt you or anyone for that matter as I dedicate my life to helping people who are in pain and I feel it is hurtful that you would throw such unkind accusations at me.

Also would like to apologize if it did cause you to be upset.

Don’t mind me I’m just a grain of sand in the sands of time and maybe someday you will look back at this whole Chanukah party thing and will be able to smile

Here is how I responded:

Thank you for your apology.

Questioning your behavior in one interaction does nothing to discount your awareness or general awesomeness in countless other interactions. We all have blind spots and places where we can learn from the experience of others.

I invite you to read this cover story I wrote for AARP magazine, on drug-free remedies for treating chronic pain. As you’ll see, the opening anecdote is about a woman whose chronic pain left her so sensitive that even walking *near* her made her scream from pain.

For those who are physically sensitive, energy can be as intense as physical touch. When you did that motion coming down on my head, the energy did in fact trigger an immediate jolt of pain, which had nothing to do with my thoughts. Please consider that just because you have never experienced something does not mean that it is psycho-somatic or otherwise invalid. Please consider responding with compassion and curiosity instead of denial and dismissal.

When we speak up, and when people open their hearts to listen, the world changes. The party interaction between you and me is fairly typical of, and is just one of, countless interactions that people with invisible disabilities experience day-in, day-out. Most people say nothing. Most of the time I say nothing. But the less aware and sensitive that able-bodied people are, the less that disabled people feel comfortable or safe going out in the world. To the contrary, the more aware and sensitive that able-bodied people are, the more disabled people feel comfortable or safe going out in the world. Our lives are made up of little tiny moments and little tiny interactions. It’s unrealistic to address every interaction, but sometimes it’s worth it to take the risk to reach out to someone, see what happens, and learn from the experience.

All the best to you, and maybe I will see you at an upcoming event.

Loolwa



Comments

Nathan B November 3rd, 2013

Invisible pain is a horrible thing to deal with.  I have a light pain sensation when I’m touched in certain areas and I have Myofacial Pain Syndrome, Degenerative Disc Disease and Fibromyalgia.  I work full time out in the world in a big city and I find that I have similar interactions every so often because of misunderstanding.  I would definitely like to withdrawal from the world when it happens.  It takes supreme effort to make myself get out of bed and go to work every day and having negative interactions in the world only makes it all that much harder.

Loolwa Khazzoom November 20th, 2013

it is so validating to get your response. Thank you for taking the time. I get so frustrated by these kinds of interactions!

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