I have degenerative disc disease, fibromyalgia, osteoarthritis, and Facet joint degeneration. I created and am the administrator of a Facebook support group for people suffering from the pain and limitations that degenerative disc disease can cause.
I was diagnosed at 19 after 4 years of chronic pain that couldn’t be explained. If the doctor had simply ordered an X ray, cat scan or MRI, we would have found it sooner. But of course I was just a kid and must have been exaggerating my pain, right? Wrong. I went to the emergency room of a larger hospital in a bigger city and they immediately knew something wasn’t right, ordered a cat scan and I had my diagnosis within 2 weeks of the initial scan.
I had degenerative disc disease and I was going to have to learn to live with it.
After a solid year of spiraling, doing drugs, drinking too much, and generally being as unhealthy and hard on myself as humanly possible, I woke up one day and decided if I had this, other people must have it too, and if I’m this far gone others must need support too. So I created “Degenerative Disc Disease in Young People” on Facebook.
As we’ve grown, we’ve accumulated members from across the globe, from all walks of life and so many different cultures. I am amazed every day at the compassion and understanding I see from virtual strangers whose only common ground is this terrible disease.
We started as a support group for “young people” but we’ve grown to accommodate members of all ages. Once you hit a certain number of members, Facebook doesn’t allow you to change the group name. Although we’d love to identify ourselves as the Degenerative Disc Disease Support Network, we are stuck with our current title for now.
Recently, I had a member post on the wall, basically describing mine and the rest of the group’s social life in one sentence:
“It’s getting to the point where I am about to give up trying to ever make plans with people for fear of always canceling at the last minute when I feel that my back is not up to the task.”
These are common posts and messages I see or receive and it makes me sad. This is the reality for nearly anyone suffering with chronic pain, where your mobility is hindered but your mental acuity is not. I 100% relate to these kinds of posts. Since I can now barely walk across the street, how will I ever be able to keep up with my friends if we go out?
I have listened and watched while hundreds of members have struggled with losing friends, trying to make new ones, and everything that comes along with that.
To the Friends of Anyone with Chronic Pain
If you are the type to stick by your sick friend (and don’t say you are unless you’ve already been in a situation like this) then kudos to you. People like you are few and far between and anyone lucky enough to be a friend of yours is blessed. I cannot thank people like you enough for the compassion and understanding you are so capable of. Bless you!
If you are the type to have a meltdown because your ill friend had to cancel shopping, parties, dinners, events, trips, etc. — then just walk away. You are the kind of person people like us do not need in our lives. You are the type of friend who will be so worried about yourself that you wouldn’t dream of considering how someone else feels. You are the attention seeking, it’s all about me; I don’t care what the other person is going through type. People like us don’t need people like you adding stress and unrealistic expectations to what is supposed to be a friendship.
We already agonize over every aspect of a social event: Will we not be able to stand? Will there be seating or at least something to lean on? Will the pain make it harder to socialize? Will people notice my limp? Will they notice my cane? Will they see my weight gain because I’ve been too sore to exercise? Will I act funny because of my pain meds? Will there be walking or physical activity involved? And so on. We don’t need you trying to make us feel worse if we can’t make it, or aren’t able to do something.
I’m bringing this up because I have personally experienced similar situations. When you text your friend and say, “I’m sorry, I’m too sore to make it,” and you get “Whatever” as a reply — all you really want to tell whoever has a problem with your body turning on you is to kick rocks, suck a lemon or go play in traffic. No real friend would act like this.
If your “friend” were in your situation they would expect nothing but support, because they would feel they deserve it. But that’s not the reality. If you are sick, you will have to work harder. You will struggle just to get out of bed sometimes, you will have a hard time with the normal daily tasks everyone else takes for granted, and you will work very hard just to be accepted as a person.
When people ask me what I do for a living, I say I’m disabled but do some work from home when I can. All they hear is “I’m disabled.” You can actually see the visceral reactions when someone my age says they cannot work because of this disease; the dirty looks, body movements and attitude changes are palpable. It’s emotionally painful to see some people’s entire opinion of you change with two small words.
I have experienced people who held a full intelligible conversation with me actually change the manner in which they speak to me once they hear the dreaded word “disabled” — as if my mental faculties abandoned me the moment they realized I had physical limitations.
It hurts me to know thousands of other people are going through the exact same thing and experiencing the same reactions. It tells me a lot about the way some healthy people think about disabilities and physical limitations. Just because I have physical issues doesn’t mean I’m not of sound mind. Unfortunately I, along with many support group members, have yet to find out exactly how to temper these reactions.
You could hold the most intellectually stimulating conversation with someone and then tell them you’re disabled; and watch the wheels turning, the assumptions form, and the bias take root.
This is of course is not true for everyone. I have met some people who are capable of great compassion and understanding. We could use more of those people in the world.
Barb Wannamaker lives in Ontario, Canada.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.