Carrie Matheson Bonin

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The first time I complained to my doctor about pain in the morning was around 16.  His response was “Most people wake up with some pain in the morning. It’s completely normal”.  For years I felt like a weak human as I watched people my own age thinking; how can most of these people wake up in this much pain and still be happy?  What was wrong with me?  Why wasn’t the suicide rate so much higher? Over the next five years this same doctor treated me for back pain, hip pain, knee pain and foot pain (all early signs of AS) with physical therapy, anti-inflammatory pills and cortisone shots. By 21, the pain in the morning was so severe my eyes would well up with tears before they were even open.  Some mornings I would get out of bed to find the lower half of my body not working – the result was usually an incredibly, ungraceful face plant.  Dressing myself in the morning was frustrating and unbelievably painful. Imagine trying to dress yourself without being able to move your spine or your hips.  Experiencing amazing amount of pain if you did manage to move them.  The constant day-to-day pain and the increasing difficulty walking brought me emotionally to an all time low.  I was 21 and waddled with the stiffness of a 90-year old woman. It was around this time that this same primary care doctor called to tell me that he had no answer as to why I was in pain, but he was going to stop all prescriptions and suggested I should see a psychiatrist to discuss the pain.  A psychiatrist! A psychiatrist! In disbelief, I slammed the phone on him and just sobbed. If my brain is causing this much pain the only reasonable explanation was that I must be COMPLETELY and UTTERLY INSANE.

For the next 4 years I carried my old x-rays from doctor to doctor looking for any answers. I continued going to physical therapy and pain management doctors with little to no improvement.  By 25, I was drowning in debt from medical bills and had given up on ever finding an answer for my pain.  I was so tired of hearing all the lame excuses a doctor gives when they have no idea what is happening.  They had me convinced that there simply wasn’t an answer, no one could help and maybe, just maybe I was crazy enough to have some how cause myself this pain.  Sleeping and walking were becoming a luxury or a privilege that I was no longer allowed to have. That year a family member happened to meet a well-respected orthopedic surgeon who agreed to do whatever he could to help.  The very first time I saw this doctor, he did ONE THING different from all the others; he took a new x-ray and immediately had my answer.  The surgeons exact words were “You have more arthritis than an eighty year old woman confined to a wheelchair but that is not the big problem.  There are major physical changes to the joints on both your hips and lower spine.” He said he “could surgically correct the problem but the same problem will reoccur.” The surgeon ordered some blood work to confirm but he was sure we had found our answer. After him, every single doctor who looked at the x-rays and the blood work agreed.   I had a ‘textbook case of Ankylosing Spondylitis’ except that was a young woman.  Then each doctors explained the same cold hard facts; there is no cure… no one really knows what causes it or how to stop the progression … it will eventually leave me crippled and deformed.   But they could treat the symptoms, which would make me a little more comfortable.   I was so relieved that at last I had an answer and devastated at the same time as each plan I had made for my future were flying out the windows one by one as doctors described what lay in wait for me.  Completely overwhelmed, but with the next statement I could almost hear my world shatter “at this rate you will be in a wheelchair by thirty”.

I was diagnosed in 1999 at the age of 25 and the years that follow mirror anyone else who suffers from Ankylosing Spondylitis.  Weeks, months and even years of debilitating flairs and inflammation in places you didn’t know could become inflamed.  Dealing with the never-ending flow of new and often-scary disorders that accompany AS.  I find myself using x-rays, c-scans, and MRI reports as a ‘score card’ of sorts, measuring how effective I have been in my fight.   I have read everything I can get my hands on, tried almost every form of alternative medicine and spend every waking moment fighting the pain and progression of AS.  I did manage for quite some time to live with the outside appearance of a normal life but over the years my fight has had numerous setbacks and small defeats.  Now, I do not fight with any false assumption of winning the war but rather I fight to ‘hold the line’.  With the constant help and care of a great doctor I am still able to fight without a wheelchair.  With the love, support, patience and humor of wonderful friends and family, I get through each battle one day at a time.   Over the years I have had to recreate my goals, my dreams, and even my career to reflect a new meaning of ‘quality of life’.

I am not writing this in search of pity, I do not want or need it.  As a matter of fact, when I am struggling to move with as much normality as possible, your pity is a blatant reminder that I am failing.  I am however writing this because I would like the words “Ankylosing Spondylitis” to not provoke a completely clueless and bewildered look on everyone’s face.  I would like people to understand that if you can’t see my disease by looking at me it is only because I have been fighting very hard every day to keep it that way, but I am slowly losing.  So your looks of skepticism or lack of understanding is incredibly frustrating.

I am putting my face on this wall to remind all the under educated, narrow-minded doctors that YES women under 25 years old, who have never had children can have Ankylosing Spondylitis.

Most of all I am voicing my story because I rely on the wonderful online communities of AS sufferers.   Their help, encouragement, and support has given me courage and strength when I need it the most. They understand in a way that no one else can because they live it and because I do not want to lose another friend to this disease without you knowing about all of them.  If life is going to get better for any of us, we are all going to have to yell together.  So I will follow the brave people before me, come out of the shadows, and stand tall in the hopes that the next generation might get a diagnoses quicker, have better treatment and maybe even a cure.

My name is Carrie Bonin

Connecticut, United States of America


8 Responses to “Carrie Matheson Bonin”

  1. Dear Carrie,
    Thank you so much for sharing your story with us. I appreciate all the wonderful feedback you have given. Your strength and courage is and will be inspiring for others.
    Sincerely Cookie

  2. WoW! Thanks for sharing Carrie! I am going to write my story tomorrow and try to get it up. I would like to borrow some of the lines in your post to say to friends and family. Thank you for being so bold.

    -Krista

  3. Remember that line in an old song “You took the words right outta my mouth”?? I was smiling as I read your story, especially the part about I only look like this because I’ve been fighting every day to look this good. But you’re right, it is eventually a battle lost. Keep the faith that our yelling will make a difference!!! Well said!

  4. Carrie, your description of life with as is the most powerful I’ve ever heard. I’m sorry you understand and can express the things I have trouble explaining and understanding myself as a 37 year old woman. You’ve really helped me today, feel less alone and feel stronger. I just returned from attending church in a wheelchair for the first time and managed to make a quick, hot breakfast with my two little girls sitting in computer chair on wheels in front of stove. I’m currently in my super expensive, adjustable bed I can’t afford, wishing I could have gone with my family to a party instead. I’ve been doing a lot of “getting real” lately and really identified with how you described trying to make your life seem so normal, but eventually failing. I know exactly what you mean. It’s just so hard to let things go that you love, you want to do, are simple, everyday things, etc. Walking and standing are a nightmare. Pain has become out of control. Like you, I’ve also tried every single medicine and therapy available for the past nine years, some have helped temporarily, some have not. There’s nothing left to try at this point. Just quit my job as a part time teacher that I dearly love and trying to learn new ways to manage my life as a woman, mother, wife, friend, etc with this stupid disease. Thank you for helping me feel stronger, knowing I’m not only girl who’s had to “get real” about as. It’s unreal seeing how people get up, get ready, walk, stand, move, etc. Blows my mind, actually. Wow. Hang in there! You are tough as nails and I really look up to you!

  5. Hi Carrie,
    My name is Daniel Spencer. I was diagnosed in 2009 with AS, but from what my Rheumy and Orthopedic Surgeon tell me I’ve had it since I was 17. I just attributed the pain to the extreme sports I was doing back then. I am now 45 and have had double hip replacements, double ingenial hernias (twice because mesh tore), and other “procedures” to try and quell the pain. It’s truly amazing the amount and severity of the pain involved with AS. I have been admitted to Psych wards for suicidal tendencies, only to be treated as a drug addict because my doctor was trying to keep me comfortable with pain meds. I also am tired if seeing that dumbfounded look on a professionals face when I mention AS. As a doctor/surgeon/nurse, I believe it is their responsibility to know this disease, and frankly I’m tired of having to educate someone who’s supposed to know this stuff already. I empathize and am completely onboard with you and other AS warriors. I say warriors because we are battling every day just for a minute if normalcy that never seems to come. Tired of praying for relief and not getting any, destroying any faith I had. Having 2 young sons that I can’t do normal dad things with like throwing a ball, running, fishing, surfing, etc. have all been taken from me. I feel cheated and robbed of a great life with my family. I find it harder and harder to keep up the fight on a daily basis. I truly hope that our voices will be heard, and people will open the eyes, ears, and hearts to help we, the AS Warriors, combat this debilitating disease.

    Thanks Sincerely
    Daniel Spencer

  6. Thank you so much for this article. You have given me hope, where I thought I had none. I am currently 27, had this pain since about 17, and thought it was in my head, as that is what everyone tells you. I was diagnosed early this year, 2017, with ankylosing spondylitis, and reading your article almost brought tears to my eyes, as I did not feel so alone anymore. Suicide definitely came up as a better alternative, but your words have inspired me to fight and ‘hold the line’.

    Thank you so much.

    -Willem

  7. Thank you for writing this. I can not begin to explain the fustrations I have if not only the physical ailment of AS, but the complete ignorance of those who have never dealt with it. Everyone thinks “it’s not s big deal” but I wouldn’t wish this kind of pain on any of them.

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