Top 3 Social Challenges of Living with Chronic Pain

By: Loolwa Khazzoom, Founder, Dancing with Pain

June 30th, 2008 • Living with Chronic PainPrint Print

Here are my top 3 social challenges of living with chronic pain:

1. The Flaky Factor

I can never, ever be relied upon for coming through on social plans. All of my friends know and accept this. Flexibility, compassion, and understanding are a prerequisite for anyone even considering hanging out with me.

Chronic pain constantly sucks on my energy reserves and can leave me depleted. I have to monitor how I’m feeling and make sure I’ve got enough “juice” to work, exercise, and take care of my basic living needs (cooking, running errands, cleaning laundry – fun fun fun!).

2. The Fear Factor

In my case, chronic pain was brought on by a series of physical traumas outside of my control, not the least of which was a hit & run, head-on car collision. These experiences left me shell-shocked and not quite able to trust people — most notably, other drivers — the way I used to.

As an upshot, whereas I once loved cruising across the country, today you will rarely find me driving to an event a mere 15 miles away. Given that public transportation can literally be a pain for me to take, and that not everything is accessible by bicycle (my commute vehicle of choice), I haven’t gotten out much — which in turn has cramped my ability to make new friends.

3. Strange Behavior

Too many times, a boisterous hug, a friendly pat on the shoulder, or an enthusiastic handshake has left me in terrible pain for days or weeks. That in turn has left me apprehensive of social contact with people who don’t already know about my condition and understand how to touch me without hurting me.

How can I safely get out into the world? Must I have a freaky chronic pain/sensitive body warning sign hanging from my neck at all times? (Note to fashion designers: Get cracking. And make it sexy.)

I have come to dread parties — where everyone is sticking their hand out at me, innocently expecting a handshake, which is never, ever forthcoming. (It took me years to stick to my guns, but I ain’t budging no more!)

Initially, I would explain, over and over and over, why I wasn’t shaking hands. I found, however, that doing so not only got extraordinarily tiring and boring, but also…

  • pulled my focus onto wounding instead of healing, which in itself flared up my pain levels
  • lead to a series of invasive questions about how I ended up in pain and what it all meant

After years of living as a social hermit, I have been making a point of getting the fuck out of my house and meeting new people. So I am now, by necessity, experimenting with humorous replies to why I don’t shake hands or engage in other social normalcy.

At a party a few weeks ago, for example, when asked why I wouldn’t shake a man’s hand, I replied that I was actively developing social quirks. “I’ve come to feel that my personality is too bland,” I explained, “so I’m trying on some anti-social behavior to spice it up.”

The man thought I was hilarious, and my anti–shaking tendencies became the joke of the evening — leading me to bond with a gaggle of musicians and artists with a flair for the absurd.

At a concert last week, a man reached out his hand to shake mine. I refused to comply. “I never shake hands,” I told him, “but I always shake my booty.”

He liked that.



Comments

Phyllis Becker June 30th, 2008

Hi, My husband avoids synagogue because the men all try to shake his hand and we haven’t come up with anything to avoid this painful contact. He offers his left, less painful hand but looks weird. I always say he’s a writer, he is, and protects his hand, but since he types at a computer, this is dumb. Need some more clever comebacks. Thanks for the ideas. My suffering sister in law never socializes and is usually desperate for a hug!

Loolwa Khazzoom June 30th, 2008

Hi Phyllis, thanks so much for your comment. It was very validating to hear feedback that other people are experiencing the same struggles with being out in the world.

Now that I have written this post, I’m actually going to print it out and carry a few copies around with me. I don’t know if that would help your husband and sister-in-law as well, but it’s worth a shot! I hope that people will post comments with additional ideas.

I just want to share that it’s perfectly valid for your husband to simply say he that he doesn’t shake hands, and if people want to ask why, he can say, “Long story, I don’t really want to get into it now,” then change the subject.

Our number one priority has to be taking care of ourselves, so that we don’t get re-injured.

Malcah June 30th, 2008

Thanks Loolwa,
I am also in pain and terribly tired, very much too often. Like you I am unreliable for social occasions and rather not commit at all. Hence becoming a hermit. It is nice to see how you deal with the situation… And perhaps see some hope for myself too – at least creating a more meaningful life for myself!

Loolwa Khazzoom June 30th, 2008

Pain is like a vortex, isn’t it? I find that I have to actively scratch, claw, and crawl my way out of it every day, or it will overtake me. I have come to see it almost like a game, like a weight machine I push against every morning. Writing on my blog has been a huge part of my healing and transcendence. I bless everyone out there with chronic pain that we all find a passion to make our lives full of positivity, regardless of our pain levels. http://dancingwithpain.com/i-transcend-pain-through-dancing-and-writing/

Brenda September 19th, 2008

Thank you, yet another helpful, affirming page. I too, do not drive except very locally. Never, ever the dreaded FREEWAY. I too, have a great tendency to isolate while previously I was extremely social and active. I too, have barely any energy. Some days I have too think about just getting dressed for 2 or 3 hours before I actually do it. I know there has to be a better way to deal with all this. I want to say again how thankful I am to have stumbled upon your page. Although, I don’t really believe it was completely ‘accidental’, but that God led me here. I will be praying for all of you, and I’ll be back to read more! Love, Brenda

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