2.17.2014

A Stiff Upper Lip: Denial, Grief, and Acceptance of Chronic Disease


It's been over half my life since I first began having pain walking. I was 17 and a junior in high school. I credited to my hips but didn't think to wonder why a teenager would be having trouble walking. I chalked it up to too much exercise. I didn't see a doctor. I didn't think it might be a sign of something to come that would effect my mobility. My mobility was being effected but I didn't even think of it that way. Denial?

We had Ankylosing Spondylitis in our family. I knew it was arthritis and it effected the spine, but that was about all I knew. I didn't know it was a chronic inflammatory disease. I didn't know it was systemic and could effect your organs as well as your joints. I didn't even know it could harm your eyes or your hands.

I did not for a second put our family history of AS and my hip pain together.

It's been over half my life since my first symptom of AS. It's been 8 years -- I can't believe that -- since I began having a lot of pain. It's been about 7 years since I started waking with a stiff lower spine, 4.5 years since my oldest was in Kindergarten and I had my first of what I think of as a general autoimmune flare -- crushing fatigue, fever, swelling, nausea, and a general feeling of illness along with the pain, stiffness, and occasional limping.

I remember the days of waking feeling like I needed WD-40, and how I knew a hot shower and a couple of Ibuprofen would relieve my symptoms greatly. How much life has changed since then...

When I was in the process of being worked up for diagnosis -- was it Lupus, they wondered, Rheumatoid Arthritis; yes, they acquiesced, it could be Ankylosing Spondylitis since I had family history, but "that wasn't as common in women" -- I read blogs of women living with severe pain and medical difficulty. I was inspired and determined that I would be that kind of woman. I would be as positive as I could be, I would shine, I would move forward in a way that would inspire other people. By the time a rheumatologist confirmed my primary doctor's suspicions of AS, I was already certain I had it, and basically walked out of his office and forward into a life of Positive & Inspiring. That was what mattered to me, that I could help others know they weren't alone, that I could show how to live life in a positive, joyful way, even in the midst of pain and with a disease that often disables and disfigures.

It's been 3.5 years since diagnosis, and 1.5 years since a Spondyloarthropathy specialist told me that I have a full blown case of Ankylosing Spondylitis. Last year, still another rheumatologist told me I have a severe case of AS.

It's been on my mind a lot recently, the severity of this disease. How it hurts and cripples people-- people I've met online and in person, people I call my friends. I know people who've had spinal surgeries, hip replacements, people who are essentially homebound. I know people who have organ involvement, eye damage, who need all sorts of mobility aids including wheelchairs to get around. I know young people who have died of organ complications to AS, and to suicide.

The pain, physical and emotional, can be unimaginable.

Sometimes it feels like I have only allowed myself to be an advocate for those people. For everyone else with AS. Sometimes it feels like I have only thought of them fusing, of their necks curving and their heads being permanently locked into a forward stoop.

This disease is not a joke. Part of how I can move forward in a positive manner is accepting that reality. This is real and it has been life changing. More life changing than most people realize.

I am working on starting to allow myself to feel sad about that. Not just grateful despite the disease. Not just thankful it hasn't yet effected others who I share genes with. I won't wallow. But I do need to process and grieve how my life is effected, how my family is effected, and that my future will be effected by a genetic, chronic, systemic, arthritic, degenerative and progressive disease.

That's not wallowing. That's just moving out of denial and into acceptance. Acceptance is acknowledgement, and that can free us to move forward. Acceptance is not giving up, or giving in, or refusing to fight.

"God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference." {Reinhold Niebuhr}

4 comments:

  1. Bart Connors SzczarbaFebruary 17, 2014 at 2:18 PM

    "Artfully" said. I started my blog, The CPPD Deposition Disease Blog as a road to acceptance for myself. Thanks for you take and I wish you well....

    http://mylifewithcppd.blogspot.com/2013/10/living-with-cppd-deposition-disease.html

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  2. A doctor my family was very fond of has AS. He had to give up his practice he was so ill. After a cervical neck fusion, a hip replacement, infusion treatments, he was too ill. His brother has it too, but it showed itself in symptoms at a younger age. It made up for lost time in our dr. I'm sad for all who have this horrible disease, especially those who don't have God in their lives.

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  3. Good to see you write with vulnerability and with strength - which, I believe are synonymous in this case. :-) You know, I don't think the acceptance process is ever really fully complete. Nor do I think the grieving process is. It's a journey, no doubt, of circles upon circles. I have learned to not be so disappointed by myself when I find myself revisiting things I thought longs since surrendered to. Just knowing this makes those days more bearable and less devastating. Sometimes its the simplest thing that brings me to what feels like the beginning. A broken plan, a summer day spent in bed, the smell of spring, the passing of a jogger... But oh, how good acceptance feels. True acceptance. There's a peace to it. I wish you this peace my dearest of friends. I truly wish you this deep, deep peace.

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  4. Thank you for this post, Jen. I've said it before, but I'll say it again - you really have been a tremendous inspiration to me. I can relate to everything you're saying and you give me courage.

    You're right that acceptance is profoundly important, and it has proven to be an ongoing struggle for me. I try to resist comparing myself and my abilities to anyone else's. I find myself worrying more about my future; worrying that somehow I'll end up giving less to my loved ones. You show me that love is always possible and that there is beauty in even the simplest things (such as the sun on your back that you spoke of the other day).

    Thank you for being you and for having the courage to tell your story...we are all better for it xoxox

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