My Story: Chronic Pain and Non-Apparent Disabilities

My Story: Chronic Pain and Non-Apparent Disabilities

Lindsay has lived with chronic pain since she was twelve years old.  She organizes a local chronic pain peer support group in Washington, DC and she works as the policy analyst at the National Council on Independent Living, a grassroots, cross-disability advocacy organization (www.ncil.org). 

I often forget that the world doesn’t see me as disabled.  I’m in pain all of the time, and pain doesn’t allow itself to go unnoticed.  Pain is distracting, demanding, and exhausting; it’s easy to forget that people have no visible indication of the pain that affects me so deeply.  People can’t see the muscles in spasm so severely that I can barely breathe.  They can’t even see the surgical scars that line my spine and belly.  So while I am living my pain every moment, it’s hard for me to remember that the rest of the world can be completely oblivious to it.

Having a non-apparent disability like chronic pain comes with unique challenges that are not often addressed.  For me, having a non-apparent disability has meant being questioned, doubted, and accused.  It has meant facing demands to prove myself when asking for accommodations that only “real” disabled people should get.  It has meant having people feel entitled to ask intrusive questions about my medical history, my personal habits, and my body.

Having a non-apparent disability has also meant that I’ve foregone important accommodations to avoid uncomfortable confrontations.  It’s meant my need for self-care has been seen as flaky or selfish.  And it’s meant I’ve repeatedly been stung by the ignorance and insensitivity of people’s words.

Unfortunately, these situations occur frequently.  Even more unfortunately, some have occurred within the disability community.  As a person with a disability who works at a disability rights organization, those instances are especially hard for me.  Having a non-apparent disability has meant that I’ve not infrequently felt out of place in a community with which I strongly identify.  It has meant that something so central to my identity has gone unrecognized – even questioned and dismissed – by people in that very community.  These experiences are not only hurtful and invalidating, but they’re also counterproductive.  Cross-disability efforts significantly strengthen the disability rights movement, and people with non-apparent disabilities are an integral part of that.

My experience is not unique, so there needs to be a shift in the way people understand what it means to be disabled.  This may be a lofty goal, but I think part of it can start with us: the people with non-apparent disabilities who live this every day.  We need to remember that regardless of these challenges, we are the best experts on our own bodies and experiences.  By sharing our stories, we not only empower ourselves, but we also use our experiences to educate others.  We have the power to start controlling the way our stories are told.  Perhaps our combined voices can help us move past the ‘seeing is believing’ mentality that’s so pervasive in our society.

Follow on Twitter

@NatPainReport

@Lindsay_Baran

 

Authored by: Lindsay Baran

There are 5 comments for this article
  1. Ma. Cherry Ann Andrea Poblete at 6:30 am

    hi lindsay i know your suffering i am a victim of this pain i was diagnosed TN hire in Philippines yes i was told being lazy and just a stubborn because they didn’t see a single scar they told me im just pretending all i can do is to cry and to pray that one day i will be free from this kind of facial pain.

  2. Michelle Peace at 10:11 pm

    I’m sorry Lindsay for the chronic pain that you suffer from. I also have chronic pain all the time, but mine comes from a severe case of crippling arthritis. It’s fairly noticeable as I need a cane to walk with. Some days are better than others, and on days when I am feeling better, it doesn’t hurt quite so badly to walk, and I sometimes feel guilty if you can imagine because I don’t seem as disabled and don’t want people to think badly of me when I park in a disabled spot. Even though my doctor has authorized me to have a plaque for my car. Yes, there is a certain stigma, if you will, over being disabled and some people think if you don’t look the part, then surely you aren’t. It’s crazy. Anyway, I always say never judge someone until you’ve walked a mile in their shoes. Thank you for your article and trying to make people more aware.

  3. Leanne Tucker at 7:23 pm

    Thank you so much for sharing. You are an inspiration to many I am sure.
    Your story has motivated me to keep going. It has been 4 debilitating years for me now. I would love to help others and get educational info out there regarding our real struggle.
    If I could inspire even just one person as you have for me, that would make me happy!

  4. Kurt W.G. Matthies at 12:17 pm

    Lindsay, thank you for sharing your story and welcome to the National Pain Report. As a fan of your tweets, and an admirer of your tireless efforts to educate, I am grateful for your contribution and hope to hear more from you in these pages.

    Invisible illness is a big problem for adults under 40, as a visitor to the chronic pain Reddit quickly discovers (http://www.reddit.com/r/chronicpain).

    Perhaps the most difficult part of living with chronic pain is the unreliability. I never know what tomorrow will bring vis-a-vis my abilities, energy, and inclination to follow through on the projects I have planned for today. And too often, before I know it, a week or more has passed and with it, my intentions fade into the shadows — and I’m half-sick of shadows.

    Seeing is believing, yes.

    Believing that change is possible can throw light into the shadows of despair, thus making what is invisible visible, and empowering the suffering millions to demand their right to effective and adequate pain treatment.

    Follow me on Twitter: @kwgmatthies

  5. Janet Komanchuk at 10:51 am

    Lindsay,

    Your article has said so much and I’m sure it will touch many just as it touches me.

    For more years than I can remember I suffered with painful, chronic, debilitating fibromyalgia. I too was, “questioned, doubted and accused,” of being lazy, a malingerer and a fraud, of exaggerating my pains and the havoc they inflicted mentally and spiritually as well as physically. Even the members of the support group I attended seemed to be in a competition of who hurt the most, who had tried the most, the latest and the most costly prescriptions, specialists, tests…

    I agree wholeheartedly that there needs to be, “a shift in the way people understand what it means to be disabled… We are the best experts on our own bodies and experiences.” I share my story whenever and where ever I can. I am one of the fortunate ones who at long last received the help I so desperately needed. Thanks to Joy of Healing, I have been in remission, both pain and prescription free for nearly 15 years. So mine is a story promoting awareness and understanding of invisible illness as well as encouraging others to keep researching and trusting their own intuitions to lead them to whatever treatment, be it medical, alternative or complementary, might help alleviate their chronic pain and disabilities. Never give up.