A.S. Face 0466: Kevin Shubert

My story is pretty much the same as a lot of AS Sufferers; I started presenting around 13, with hip, foot, and back pain, which was misdiagnosed as everything from slipping discs, to bursitis, to depression when the family physician couldn’t figure it out.  8 months after the birth of my son in 1995, I was finally diagnosed properly, at the age of 27.  I was only diagnosed properly at that point because the Family Physician we had, also suffered from AS, and he referred me to a rheumatologist.

At that time, I was told to expect to be in a wheelchair by age 30.  At 34, the doctors couldn’t figure out how I was able to continue walking; one doctor came from behind her desk, took my hands, and with tears in her eyes told me I was strong and a hero for being able to continue to walk, and to continue working to support my family.

In March, 2006, I was told I needed to stop working, which I did; this was the one period in which I was seriously contemplating suicide, and I owe my survival to my wife, Susan, and children, Chandler and Cheyenne.   2007 and 2008 are mostly a blur due to the heavy narcotics the doctors had me on for the pain, which never completely went away. 2007, I spent almost 7 months confined to the bedroom, and the remainder for the most part to the house.  I was using a cane to walk, and occasionally two.

Over the years, I’ve tried everything the doctors have thrown at me, including experimental treatments and Enbrel, but until 2 1/2 years ago, when we began Humira therapy, my AS was non-responsive.  After starting Humira, about 3 weeks in, it felt like someone had dropped amphetamines into my morning coffee, I had so much energy. I stopped using the canes, and as long as I manage my day-to-day properly, I have been able to return to work.  Regardless, pain is my constant companion.  Some days it’s tolerable, others it’s excruciating, but it’s always there, from the tips of my toes to the top of my head.

Unfortunately, like many who suffer from this debilitating and devastating disease, public awareness and even awareness within my extended family has been virtually non-existent, the exceptions being my wife, son, daughter, my parents, an aunt, and my father-in-law.  Other relatives in my extended family have offered well wishes from time to time, but in most cases, the rest simply haven’t bothered to educate themselves, despite my putting information in front of them regularly, and haven’t cared enough to do so.  I’ve been called “shiftless”, “lazy”, and the whole host of names and labels many of us have had to deal with as a result of bigotry (and it IS bigotry as a result of ignorance — would people treat other fatal disease sufferers this way?) by those who don’t understand our condition.

Sadly, as a result, my children have suffered being excluded from many things simply because some people hide their heads in the sand, or don’t understand that while I may be in a good mood, it doesn’t mean that I’m not feeling the pain that’s a constant companion in my daily life.  I’ve been told that I’m “choosing” not to be involved in certain situations, simply because this disease has forced me to plan out my days, nights, and what activities I can do.  I use the “pain bank” approach; if I withdraw so much activity, there’s a penalty in pain to be paid…if I deposit energy by resting, sometimes I can withdraw without penalty.  Just like real banks, though, it’s a lot easier to accrue penalties than interest.

I’ve also spent a lot of time and energy working with Patient and Peer Groups, sat on the board of directors of a national organization, and worked in the Chapter office of another, and just Peer Mentored my 200th fellow patient.  Unfortunately, until we as AS Sufferers and our families get involved, little traction is being gained.  Groups such as Faces of AS, Ankylosing Spondylitis Awareness Project, and the World Autoimmune Arthritis Day are making a difference…but we need more of us involved.  Our families need to get involved, and we need to educate people on the debilitating and disabling facets of this disease.

Own your disease, don’t let it own you; and NEVER let ANYONE make you feel guilty – including yourself – for life circumstances resulting from your Ankylosing Spondylitis.  Many of us do feel guilty about the impact this has on other people in our lives, but the plain truth of it is that it is NOT our fault.

The last thing I would like to say to my fellow AS Sufferers and their families is this:  keep positive, keep hope alive, and keep looking for ways to improve your situation.  If something is not working today, keep the faith as best you can, as there are new studies, therapies, and treatments being developed all the time.  If I made it this far, so can you.

Canada


12 Responses to “A.S. Face 0466: Kevin Shubert”

  1. Dear Kevin,
    Thank you for sharing your story with us. I especially thank you from the bottom of my heart, because today more than anything I needed to read it.
    Sincerely Cookie

  2. I love your “pain bank” analogy!

  3. Hi Kevin, As a fellow sufferer of AS many things you said in your story I can relate too , I wish I had more family support but no one in my family seems to understand my condition and they come over sick sometimes even though they know I’m on Humira and get sick easily, I stopped celebrating Christmas with my Family because they alway’s come over with Flu’s & Cold’s ,One family member even said to another family member *Don’t touch Jimmy because he could die . Seems the only support I have recieved is from my Fiance’ who has really took the time to read up on my condition and helps keep the sickies away. Thank you for sharing your story & bringing awareness to the condition we share, Sincerely Jimmy

  4. Kevin: Thank you so much for your story! I do feel guilt–thanks for putting that into perspective. I can especially relate to the exclusion–people do not understand, unfortunately. I am more hopeful now than ever as my rheumatologist is now going to prescribe Enbrel! Wish me luck! Welcome to the group, Kevin!

  5. Great storie, I have seen you taking the lead in the AS cause and have seen you work through pain. you are really an insperation to thoes who know you.

  6. I think the doctor was right. Your sheer will to walk and continue working in spite of the medical predictions enabled you to overcome all ‘odds’. I think your endeavor to educate people in your community and beyond is a great thing. You’re an inspiration to many.

  7. Thank you folks — it was a bit of a heart-churner to write, but I needed to do it, both to contribute, and for myself. I struggled with guilt myself for years, particularly around the impact it has also had on my wife and children, and let it push me into bad situations with other family members as well; I’d try too hard to keep involved, but the street wasn’t running both ways because of the lack of understanding. It took some sessions with a mental health therapist to beat it into my thick skull 🙂

    Despair is a powerful thing, but I think Hope can be even more powerful…we’re going to have bad days, weeks, or months, for sure, but we’re entitled, as long as we don’t let it rule us. Unfortunately I’ve peer mentored 3 families where suicide was attempted, in one case successful, and heard a number of second-hand stories as well, and yes, the pain and suffering is responsible, but the impression I’ve gotten is that almost as responsible is the lack of understanding and compassion from societies, employers, circles of friends, and even families.

    Despite lack of funding, public awareness, and other resources, however, Research, Alternative Treatments and Therapies, and a host of other possibilities are being worked on all over the world…and folks like Cookie, ASAP, and WAAD are making huge inroads — just hang in there!!!! 🙂

  8. I can really relate to your story especially the guilt not be able to do things or go out due to AS going to stop beating myself up about it so much .thank you for sharing your life with us a hope you get that job you deserve good luck !

  9. thankyou for your story kevin. sometimes i feel so deeply sad about living with AS and some days i even welcome it because it gives me a different understanding and appreciation of life i know i wouldn’t otherwise have.

    of course i would happily not have the pain any day of the week (make that every day of the week!) and reading stories like yours give me a little more strength, so thankyou.

    (matt 270)

  10. Kevin- I really love your attitude towards AS, & your story, while it is very sad, it’s similar in ways to my own, & I found it very inspirational. I admire that you have been through so much, & are so detemined to live a “normal” life with AS. I especially liked the last two paragraphs you wrote, about not letting other people, or yourself make you feel guilty about having AS, which is something I do way too often, & about owning your AS, & to not let it own you. I also like the last paragraph about staying positive, & hopeful. I’m so happy that you have a loving, caring, & understanding wife & children that must keep you strong, even at your worst times. I’m really glad that Humira has made such a big difference in your quality of life. I understand that the pain is always constant, but your analogy about the bank is very true. I wish you all the best, & I hope things only get better for you. Thank you for sharing your story. – Lisa 🙂

  11. I understand completely, I have had days when my biggest struggle was to stay alive. I have family members also, close ones, that also have chosen not to read any material I have given them. It’s heartbreaking. I guess they are weeding themselves out. All the best to you.

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