My Journey with Ankylosing Spondylitis

By gillian

4 min read

My Name is Gillian and I live in Bromley Kent. l have two sons Mark and Lee l started to get pain and stiffness in my lower back and neck in my early 20’s. Then soon after my youngest son was born in 1978, it was getting worse.

Over the next few years l was constantly at my GP’s surgery complaining of this unbearable pain and terrible fatigue l was feeling. He was in his early 30’s and not long out of medical school , so looking back now how come he did not suspect Ankylosing Spondylitis as l had all the classic symptoms. Each time l visited him, he would write me out a certificate to stay home from work and tell me to have had bed rest. l would tell him that resting in bed made my pain and stiffness worse, also that l knew my own body and knew something was seriously wrong with me. He eventually told me it was all in my head and there was nothing wrong with me and l needed to see a psychiatrist.

Left searching for a diagnosis, living in immense pain

l think he came to the above conclusion after my neck was put into a collar and l was given traction on my back. He did not believe me when l said it had made my pain worse and l was very very depressed because l was not sleeping because of pain, and l thought l had cancer of the spine as l was losing so much weight.

l started to question myself and thought maybe he was right, it was all in my head. The back pain was due to my life style, as l was raising two sons alone as my marriage had broken down and l was working part-time.

He refused to treat me anymore and l had the ordeal of finding another Doctor (which was not easy) l was taken on a 6 months trial basis and this Doctor continued to be my Doctor for the next 25 years till he retired last year in 2011.

When my ex husband used to come and pick my sons up he would say ”Gill stand up straight you are stooped over ”. So my posture was changing and l was in unbearable pain by this time and was only getting about 2 hours sleep at night.

An official diagnosis: Ankylosing spondylitis

l had to rely on my ex husband to help me with raising my sons as l was in no fit state to do this alone. At times l felt like taking the pain killers and other drugs for depression l had been given to end this pain. But that would have been a selfish thing to do as my pain would have been over but l would have caused my sons a life time of pain.

My new Doctor listened to me and sent me to have x-rays and a blood test and the result came back that l had Ankylosing Spondylitis and l was HLA-B27 positive. I was scared as I had never heard of Ankylosing Spondylitis but l was also relieved to have a diagnosis and to know it was not all in my head.

l had to wait 3 months to be seen by a Rheumatologist at my local hospital and was left to get on with my life living in constant pain, l was working at a private hospital but had been off sick for a few months and it was through a pharmacist there that l was put in touch with a Rheumatologist that looked after me to the highest standards for over 25 years, but sadly like my family doctor he also retired last year 2011. He referred me to the Royal National Hospital For Rheumatic Diseases in Bath and they have also looked after me for 15 years to the highest standards. l am fortunate enough to attend the Bath AS courses at the centre of excellence at Bath.

l was taking Phenylbutozone and Sulphazaline and was worried about what effect they would have on my stomach.
Through being treated at Bath, l was asked if l would like to do clinical drug trial for TNF inhibitors as l reached the criteria to take part in this trial , l will put a link for you to read the rest of this next chapter for yourselves:

Denial of 'wonder' drug could leave mother suicidal, News Shopper
Interview with Gillian and the local news, YouTube

Surgery: Improvements in my quality of life

In 2009 l had major spinal correction surgery because l had great difficulty in holding my head up and my quality of life and mobility was going down hill fast. The result of the surgery has made a huge difference to my quality of life and my mobility and l can cope with what pain and discomfort I have living with this chronic condition.

My youngest son had a car crash when he was 18 and the tests come back that he is also HLA-B27 but so far he has no signs of having AS but he has inflammation of the bowels. My eldest son has no signs of having AS.

Paying it forward now

It is so important to me that the younger generation get early diagnosis and the best treatments possible for them to live as normal life as possible. My biggest blow was when l was medically retired from work in 1999. l campaign and try to support people with AS and find this is rewarding when you can help others. You may find this link useful: National Axial Spondyloarthritis Society

l have met many fellow Ankylosing Spondylitis friends when attending the Bath AS Courses and worldwide through Facebook and am happy that we can all support each other the best we can as it is only us with AS that know what we go through.

I have quite a few challenges to over come with this condition but I believe that these challenges have only made me stronger. Thank you for reading

–Gillian Eames

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Ali Long Moderator & Contributor
Hi <inline-mention username="gillian" user-id="2107588"/>! I am so sorry that you had a doctor tell you that it was all in your head and that you needed to see a psychiatrist. That must have been very traumatic to hear, especially when you knew yourself that soemthing was wrong! I'm happy that finally a doctor listened to you, but frustrated that it took so long for that to happen! I dont understand how doctors can leave their patients in pain. It's great to read that you were are are being looked after at a high standard. It is also great to read that your surgery was a success! And now you can cope and live your life in the pain and discomfort that you have. This community has helped me immensly, both physcially and emotionally. Its so great that we have a community to support and listen to us. I believe that everything that you have been through has made you stronger, or more to the fact, made you realise just how strong you truely are! Thanks for sharing your story I really enjoyed reading it. Ali (Moderator).
Julie Vallortigara Moderator & Contributor
My dear Gillian, It's lovely to see you here! Thank you for sharing your story. That's important for people to know your journey. I am so happy that NASS made us meet few years back, at my very first NASS conference. Then we met again at NASS head office, always a pleasure to see you and chat with you. Yes, you are a wonderful advocate and an inspiring woman. I hope we will get to meet again soon. Take care, Julie xxx
1. gillian Member
 <inline-mention username="Julie The honour was mine meeting you xxxx" user-id="2107984"/>
Sarah Lee Contributor
Hi there, thank you for opening up to the community about your experience. I share a similar story, although we may lead two different lives, I too was made to believe the pain was all in my head and took a while to receive a diagnosis. I am sorry you understand the frustration that comes with that experience alone. I'm happy you've found a proper diagnosis, and I know it can be overbearing at times, but know that you are not alone. Through sharing these experiences openly, we create more advocacy and awareness to AxSpA. Every story is unique to each individual, and I am so glad to see you on this platform sharing yours. Everyone in this community is very welcoming and empathetic, so I really hope you find a sense of community and relatability. If you ever want to chat, feel free to contact me. You can always find a shoulder to cry on, or a friend to reach out to here. Sending you love, Sarah (community advocate)
1. gillian Member
 <inline-mention username="Sarah Lee" user-id="2106878"/> Thank you
matthew-ferry Community Admin
Hi Gillian, thank you for sharing your journey with our community. I also watched the interview you linked with the news channel. So much of what you describe here and in that interview, I hear of similar experiences shared by community members: people close not understanding, the diagnosis and medication delays. These are such difficult circumstances, and can jus compound until we're at our breaking point. Thank you for sharing these resources and your advocacy. The importance of early diagnosis and management cannot be understated. Here in the United States, we sometimes hear from patients frustrated that their doctors are unsure how to diagnosis or treat AxSpA. There does seem to be growing awareness, though I hope that these next few years that we see improvements. How are you feeling these days? Are you still using a biologic as part of your treatment? Please know we're here with you for support. And thank you again for sharing so honestly how living with this condition as impacted your life. Warmly, Matt (Team Member)