My story is like that of so many others with AS in that I have suffered for many years but was diagnosed just over twelve months ago.. My name is Sari Smith and I have AS. I am 54 years old, a writer, I live in Melbourne, Australia, but I came from Western Australia fifteen years ago and prefer the warmer, brighter climate of the West. Having dragged my children over here, going back does not look like an option at this stage. When I was a child I often had sore feet and became very tired at times, for example, wanting to sleep for hours after swimming lessons. At fifteen years old I had a severe bout of gastro which left me with IBS for the rest of my life. I had every test under the sun and nothing was found until a Gastroenterologist found minor cellular changes to my GI tract suggesting Coeliac disease in the late 90’s. I began a gluten free diet and improved -plus my long-term iron and zinc deficiencies improved. I became a teacher and later, a university lecturer in Writing, having married young and had three children. When I gave birth to my third child, the labour was excruciating on my back and it continued to be very sore. I was encouraged to do physio but it was agonising and I refused. I intuitively knew that those exercises were going to do harm and just walked the pain off until it began to get better months later.
In 2004 I contracted parvo virus which triggered “reactive arthritis.” (a common first episode of AS I now know). I was devastatingly ill for 12 months, had to take two months off work and returned part-time as I was the bread winner (having divorced and remarried, three children to support). Every joint in my body hurt 24×7, I couldn’t function without Viox, panadeine etc. I lost 10 kilos and my children secretly thought I had AIDS (My daughter confessed this to me a few days ago. Tragic that they worried without actually asking me!). My husband and I honestly thought I was dying. I went to several rheumatologists who were rude, dismissive, arrogant and downright mean. Finally I went to a woman rheumy who listened and asked about family history. I didn’t mention my Dad’s decades of back pain because he had a story going that it was all from injuries in the armed forces (probably incorrect), his long history of medications or the fact that he’d had his neck fused surgically and mainly moved around in a red scooter!
Instead, I remembered an Aunt who was crippled so badly that she lived her life in a chair and couldn’t go out. The kind doctor concluded that there was some inflammatory arthritis in the family and I should start on Plaquenil. I went back to my GP who told me not to take it, that it wasn’t warranted. The lovely Dr died that year and the new rheumatologist greeted me at every appointment with “This is nothing compared to what I see every day.” The fact that I looked relatively slim and healthy seemed to blind her to my suffering.
By this stage I had hundreds of symptoms and many diagnoses; fibromyalgia, chronic fatigue, Raynaud’s, chronic sinusitis, plantar fasciitis (though the Xrays could never detect it) etc etc. My life was a misery.My heels had hurt for a decade, sometimes so badly that I used crutches. The worst symptom, though, was deep and crippling fatigue. I took redundancy from my job and a couple of years later, after much financial suffering, a former colleague supported me to apply for disability insurance which was part of my Super scheme. My application was successful which has reduced the stress and pressure considerably. It’s a modest, fixed income but far better than being on unemployment benefits. I mention this because too many people don’t know that their Superannuation Fund may carry disability insurance. It used to be compulsorily paid by the employer in Australia so if you are over a certain age, it’s likely you have it. When/if you leave your job, the workplace often doesn’t notify your Super Fund but they should. There are many, many unclaimed benefits which makes me angry for those missing out.
Coming from a highly competitive academic environment I felt like a failure: I wasn’t writing or publishing, was spending all my time at home, feeling isolated and depressed and I hadn’t met many of my self-imposed goals. I would try new career directions, volunteering, new interests etc but then when I was too tired and in pain to follow through, would blame myself for lacking will or persistence. ( I was also trying to finish my PhD and probably hold a record for the number of times I quit then re-enrolled, depending on how well/unwell I felt at the time).
Just over twelve months ago, I went to a walk-in clinic with sinusitis and horrific lower back pain which woke me every morning and met the GP who was to change my life! He was clearly very intelligent but lacking in bedside manner. He asked me why I wasn’t working (Hey, I look okay, right?). He compared me to his patients with “real” arthritis who get shots every couple of weeks. I’d had enough of years of this abuse. I told him, angrily but in a controlled voice, that I had a friend with Rheumatoid Arthritis, that on balance she and I concluded that I was sicker (she was still able to work) and I gave him a litany of my symptoms, saying that everything from my head to my toes hurt. His whole face changed. “What’s wrong with your head?” he asked, smiling. I answered, “I have terrible psoriasis.” Not one of the genius specialists ever actually put all the symptoms together or asked the right questions. Within a week he had tested for HLA B27 (positive) and sent me to a rheumatologist. I was started on prednisone to get the current flare under control followed by Methotrexate.
How is my life today? My disease is not under control and I’m waiting to see an AS specialist in a couple of weeks to get another opinion on my treatment. I still have a lot of losses to grieve as well as a lot to be thankful for. I have a supportive husband who does nearly everything around the house (I like to cook!), wonderful children and a beautiful disabled grand-daughter. I’m learning constantly and letting go of the rather driven, too-busy person I used to be. Would love to have the energy for more creative work but perhaps in time… PS. My Dad is 85, living in care but still loving life. I went with my Mum to see his GP and he was finally diagnosed with AS!!