A.S. Face 1323: Elisabeth
I’m a 36 years old French girl; I lived in Paris all my life except for a few years in Brussels, Belgium, where I live now.
I was diagnosed with AS in April 2009.
The first awful pains started when I was living in Belgium, in august 2008, in my hips and trochanters, after I walked 10km. It was so sudden and aggressive that I really was scared to have such violent pain, I had to lay down for 24h after that, I couldn’t move, and couldn’t walk properly for a few days.
I went to see my osteopath, who told me, after 3 sessions, that something must be wrong as the pain wasn’t lowering. He told me to go and see my doctor (GP).
The first thing my doctor did was to give me anti-inflammatory (NSAID), that really helped, but wasn’t enough to cover the pain. He asked me to take a blood test to define if I had the HLA-B27 gene : I don’t have it. The doctor told me, in a relief tone, “you don’t have AS”. It was the first time I’ve ever heard the name of this disease. The doctor then told me “it must be fibromyalgia”. Again, first time I heard this word.
But as the hips & trochanters pain were still there in April 2009, despite the NSAID, I went to see in France a rheumatologist who was a friend of my family, because I wanted to have his advice on what to do for my pain, I thought something was wrong with my skeleton.
He made me take x-rays, MRI, and told me I had AS : my inflammatory markers were high, and I had joint effusion in the hips. He explained that many people with AS didn’t have the HLA-B27 gene.
At first, I really didn’t realize at all what AS was, and what it meant for my future.
Actually, I’m quite lucky I was diagnosed this quickly, when in France the average between the first pain and the diagnosis is 7 years.
This rheumatologist gave me another NSAID, that was more efficient, and added Amitriptyline, to lower the pain threshold. That also worked for a while. But after a few months, I was terribly handicapped by ankylosis, and the pain in the sacrum-iliac was killing me. He said it was time for me to take anti TNF. For that, I needed to see a rheumatologist in Belgium (where I had my social security at that time), to ask for a hospital prescription.
I managed to have an appointment with the number-one rheumatologist of Brussels, who told me he refused to give me anti-TNF, as I only had 2 joints injured on the xrays (sacrum-iliac and hips), so I wasn’t fitting in the quota (3 joints injured). He even said he doubted I had AS, he said it was probably “just stress”. I was in shock. I left the hospital crying; hopefully my parents were there with me and almost carried me outside the hospital.
I was desperate not to have the needed treatment. I went back in France to see the rheumatologist I first saw, he was amazingly nice and understanding, and also very shocked I couldn’t have anti TNF in Belgium because of quotas reason. He managed to prescribe Enbrel 50 to me (Etarnecept), in France, and so I began having one shot per week in September 2009.
It took a few months before I felt any change, and it went progressively better for a year, before I really felt improvement in my pain and ankylosis. I had to keep on taking NSAID and Amitriptyline, cause Enbrel wasn’t enough.
In May 2010, after 3 weeks sick break because I was such in pain and couldn’t move, the Belgian company I was working for fired me because of my disease. I had to give my company car back, and as I didn’t have enough money to live alone without a salary, I had to leave my flat, and go back to France to live with my parents.
I really realized what living with AS meant. I was really not the same person, suffering all the time, not sleeping well, being constantly tired. My friends and family were not supportive, they didn’t believe I was in pain, they thought I was just being lazy. It was terrible to be all alone facing this terrible situation, and having everyone around thinking you’re a fraud. I lost most of my friends, who were not returning my calls, etc… It’s really a terrible way to find out who are you real friends, the ones who’ll stay around you no matter what happens. I ended up having a small depression, cause after a little denial and angriness, suddenly the despair hit me: I had to live with AS all my life; I was not going to get “cured” of it.
Beginning of 2011, I was still not able to work, and i saw a poster for an AS conference, in the rheumatologist hospital department where I regularly went to see my doctor. I signed in for this conference and went there alone in march 2011, and it was a big shock: around 300 people were there, having the same illness that me, I suddenly felt I finally was out of the tunnel and saw the light ! Dozen of specialized doctors and physiotherapists were there to explain AS, talk about the treatments, the pain management, how to live with AS, etc…
I learned a lot about my disease and this conference helped me accept AS. I was surely not going to be cured of AS one day, BUT I knew there were a lot of medical research and innovation, I knew I wasn’t alone, and most importantly, I finally understood all my pains and ankylosis, how the disease worked, and for me that was a huge life improvement, to be able to rationally understand everything that was happening to me.
After that conference, I decided to get involved in the staff of this patients’ association who had organized the conference. I lead monthly support groups for patients and their caregivers, chat with patients on the association’s facebook support group, helped organized the 2012 conference, etc…
I really loved – and still do – being useful to others, sharing experiences of AS, tips, and most of all, being able to give hope to other patients, cheer them up, support them all the way until their own acceptance of their health condition.
In august 2011, I had a key family crisis. My parents weren’t supportive at all, and just said something about me being lazy, hypochondriac, not being able to get a work, a flat, etc… I exploded. I yelled at them like I never ever did before (and never did ever since!). I was crying, screaming all arguments I could think of : the pain, the tiredness, the stiffness, the loneliness, despair, etc… etc… I still remember their faces. That image will be in my head for all my life. They were scared : I was not a violent, screaming kind of girl (and still aint), so I guess they were really surprised. And then, from that moment, they began to understand. They cried after a couple of days, apologizing to me for having giving me this disease, for having not supported me from the start. They felt so guilty and helpless. I had to comfort and support them for a couple of weeks before they were ready to help me fight AS. Wow, what a HUGE change in my life! To live with people who were finally standing up for me, helping me with anything I wasn’t able to do, and NOT judging me anymore.. It was such a relief. They still got some guilty feelings after that, but I keep giving them info on AS (books, DVDs, …) so they can understand it’s not their fault. It’s no one’s fault. That’s very important for caregivers to understand they shouldn’t feel guilty or hopeless. Their support is so important, even if they cannot act on our AS.
In 2012 I read an article in the Belgian patients’ association newsletter, about a medical center in Bad Gastein (Austria), that was using radon as a treatment for AS and other health conditions. The article was giving clinical proofs of this radon treatment’s efficiency, so I thought it was worth trying it. I went there for 2 weeks in October, had the radon therapy (thermal baths), and indeed, after the normal 4 to 6 weeks’ time after the end of the treatment, I felt a huge relief! Less pain, no more ankylosis, and most of all, less tiredness!! I was feeling good again, being able to have more activities each day, I started to work a couple of hours each day, I gained so much focusing ability! I am thus going back to that radon therapy place once a year, and my condition has really improved since 2012. Of course I know I will not get my former life back, where I was able to work up to 10 hours a day, go out late every night, etc… but it such an improvement compared to the condition I was in when AS hit me in 2008 !
As a conclusion, I would say that resilience is so very important for patients to have a better life. Acceptance of our disease is mandatory to feel better. And don’t hesitate to shake your relatives a little bit, so they face your disease, and support you.
Don’t lose hope.