My Story: Pain and Friendship

My Story: Pain and Friendship

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.

Barb Wannamaker

Barb Wannamaker

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.

12_7.jpgBarb Wannamaker lives in Ontario, Canada.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

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.

Authored by: Barb Wannamaker

There are 10 comments for this article
  1. Debbie Lee at 10:52 pm

    Hi Jackie,
    Good to hear from you but I’m sorry to
    hear that you, also, have RSD/CRPS…
    and since you were only 26.

    Do you (like me) have a real problem
    putting words to the devastating effect
    on your life? I do. Firstly, because I
    don’t want to upset people (or myself!).
    Secondly, even people who have some
    physical pain don’t understand that I’m
    really not well enough to do what they
    do… travel, have a pet etc.

    People always say how young and well
    I look and that they forget I’m in pain.
    I smile and say: “Thanks… but I’d
    rather look older than I am etc and feel
    physically better”. Although many people
    are dismissive, judgemental or wanting
    to be the rescuer – making it ‘all about
    them’ – many humane adults show some
    sort of understanding, empathy and
    validation.

    By the way, I’ve always referred to
    RSD as: Rat Shit Dystrophy and CRPS
    as CRaP Syndrome!

    I’m not on FB, so I look forward to hearing
    from you by email, which I provided to
    NPR.
    (As you’re on FB, I’m guessing that you’re
    more computer literate than I am and know
    how NPR facillitates email contact).

    Debbie Lee.

  2. Jackie at 6:53 am

    Debbie Lee
    I can relate 100% I was diagnosed with RSD when I was just 26 years old. If your on FB look me up … jackie harkins
    I’d love to talk more with someone who gets it!

  3. Debra Zipp at 7:33 am

    Hi.
    I too have DDD, as well as lumber pine stenosis, and fibromyalgia. I am 57, and physically feel a lot older. I have had ablasion in 6 areas of lumbar spine it didn’t work, have had two injections, other than that I have 800mg ibuprofen to take which I was recently told can be troublesome for someone e with asthma. I was taking them often and wonder y I had trouble breathing. Any way I try to do part time work And till I geT a lot of paid w/o benefit of a doc who heard me

  4. Elizabeth at 6:07 am

    Hi Barb – thank you for sharing your story. I suffer from all that you listed as well. I’ve been struggling daily with chronic debilitating pain for many years. One of the things that I know helps me get through is people like you! Your story and the place you’ve created to hear others’ stories is validating and inspiring. And serves to remind me that I am not alone!
    God bless.

  5. LISA RUNDGREN at 10:00 pm

    I also have the same back issues as you do. I have had a total of 4 back surgeries. Two which have been fusions. I am now left with nerve damage. I have R.S.D for the last 18 yrs and the back issues for the last 10 yrs. I am also dealing with fibromyalgia. I am 51yrs old and female living in Anaheim CA. I have lost several dear friends and my mom who was my biggest supporter passed away 2 yrs ago. I would like to be able to communicate with others that are dealing with the same pain! Thank you Lisa Rundgren

  6. Dawn Nulph at 2:56 pm

    Hello.I’m 49 years old and have been diagnosed here and there for three years
    Bottom line I suffer everything you just wrote..Sounds like what I always wanted to write but didn’t want to hear the negativity or the non
    bealivers.Kudos to you dear lady..I very much admire your story and bravery at such a young age..My heart goes out to you to be in this condition and pain 24/7.
    You have inspired me..
    God bless you as I hope they one day find that magic pill to kill the pain.
    Until then its one day at a time..minute by minute.
    Thank you for sharing your story..
    Dawn from NJ

  7. Rainey at 9:33 pm

    Hi Barb

    I can relate (unfortunately) to your story. I was 27 when my life was completely upended by a medical condition which caused chronic pain. I had major credibility issues in part because I was so young (but also because the career destroying dream ending medical condition was an invisible illness). People thought that I was either trying to get out of my responsibilities, trying to score drugs, or both. Twenty-somethings are invincible… right? Meanwhile my life was imploding: I couldn’t work; I couldn’t go to school; I couldn’t even tell people what was wrong with me (I need some friggin’ answers now please!). WTF? Anyway… I could have used some support.

    I was sad hear your story because it sucks to be a young person in pain (and it sounds like you were much much younger than me when your pain became economically disabling). I am glad that you started a Facebook group for young people with Degenerative Disc Disease. The next time that somebody is taken aback when you say that you are disabled, don’t sell yourself short. Tell them that you are making a contribution to society by being of service to other people in chronic pain.

  8. Gerard Hill at 9:18 pm

    Great story Barb.You stated it exactly the way it is ….with events,friendships,expectations,and making plans.I contracted DDD in 2009.One disc disintegrated at L2,bulges at 3,4,and 5, and herniations at three different levels in the neck.I was a Letter Carrier for 28 years,15 of those years were spent walking with a 45 pound bag for nine miles a day.I was hooked on Codone,filed for Disability and got it in 2012,had four epidurals and wear a Buprenorphine Patch every seven days.But I can not perform or do anything with my right arm and leg for any length of time because the neuropathy comes right back.Good days ,bad days.Buprenorphine is still an opoid but is delivered thru the skin.Hopefully everything will go well with Medical Marijuana in New York State,with New York recognizing neurospacisity of the back.Keep allof your paperwork to be vetted into the program in Jan. of 2016.Thanks for making me a member of your community.If I can do anything,I can share the info that I have.It’s allanyone of us can do.

  9. Debbie Lee at 7:55 pm

    Hi Barb,

    Thank you for expressing
    the isolating impact of chronic
    pain – exacerbated by other
    people’s self-absorbed reaction
    (ie. the unempathic, ‘all about me’
    disfunctional attitude).

    I have been managing the pain
    (and other limiting symptoms)
    of RSD/CRPS for nearly 30 years.
    It is permanent physical injury to
    the nerves and vascular system –
    invisible to others as I can only go
    out and socialise or shop for a few
    hours.

    Mostly, I have acceptance, high
    hopes with low expectations and
    a sense of humour. However, I’ve
    pretty well ‘had it’ as it has
    progressively spread through my
    whole body (from my head to the
    soles of my feet)!

    Reply if you want to and are able
    to. Either way, all the best to you,

    Debbie Lee.