Ankylosing spondylitis: “I went more than 10 years without a diagnosis!”

Hello Céline, thank you for agreeing to share your story with us on Carenity.

First of all, could you tell us a little bit about yourself?

My name is Céline, I'm 39 years old and I'm the mother to a 13-year-old son. We live in Charente-Maritime department on the central-west coast of France, more precisely in La Rochelle. I am a former carer but, having been made redundant due to occupational disability, I am now a graphic designer/illustrator.

Photo courtesy of Céline

When were you diagnosed with ankylosing spondylitis? What prompted you to seek help? What were your first symptoms? 

In 2011, my health went downhill really quickly, but the doctors blamed it on a possible overwork. At the time, I was working day and night shifts with 60-hour weeks.  

Then one morning, I physically couldn't get out of bed... They had to wait until I could no longer walk before saying "hmm, maybe there's something else going on".  

Unfortunately, no one told me that that was the starting gun to the obstacle course to get a diagnosis...

How long did it take to make the diagnosis? How many doctors did you see? What tests did you undergo?

I quickly learns that they could have seen my AS coming because, in reality, I started having health problems as a teenager. You could say I went more than 10 years without a diagnosis, but they always blamed it on work or stress. I was told that it was psychosomatic!

When, in 2012, I could no longer walk, they finally prescribed me some tests. I went to see a rheumatologist and, from that moment on, I went through one of the most difficult periods of my life because I didn't know what diagnostic delay meant... The tests only showed signs of inflammation, but I didn't have the famous HLA-B27 gene (I learned later that this is no longer a criterion for diagnosis). 

The rheumatologist would greet me each time with words like: "Well, what have we got today? A sore ankle?" or "Look, you're young, you should be enjoying yourself rather than stressing over nothing", and finally "You're too young to have an old person's disease!".

He was convinced that it was all psychosomatic (so in my head) and then he mentioned that it could possibly be fibromyalgia... He left me for 3 months without any treatment for the pain. 

After barely 2 months, my condition was getting worse and worse, I could no longer walk, the pain started to spread to my spine. 

I then decided to make an appointment in a pain centre of the University Hospital of Poitiers with my medical file. There, the doctor looked carefully at my huge file, my blood tests, my various radiological exams and said to me: "Listen, I think that you are affected by ankylosing spondylitis, I am sending you to see a doctor specialised in this disease who is also affected himself by AS. I think he understands how difficult diagnosis can be."

This was the first time I heard about this disease... I managed to get an emergency appointment within a fortnight because both the pain centre doctor and the specialist thought the disease had already progressed too far... Two weeks later, I got my diagnosis. 

I was immediately put on a heavy round of treatment because, unfortunately, the disease had reached my spine, my heels, my wrists... 

The synovitis (joint inflammation) did not appear immediately. I am HLA-B27 negative. Fortunately, I used to take pictures when the inflammation would happen because it was so impressive... But every time I went to see the doctors: zero inflammation! Luckily, I had thought of taking the pictures, otherwise they wouldn't have believed me... 

Thanks to this specialist doctor, I learned a lot about this disease. I learned that the gene is no longer a criterion for diagnosis, that sometimes nothing is visible on the X-rays at the beginning, and that AS can affect other joints or even organs...

How did you feel when you received the diagnosis? Did you know about ankylosing spondylitis before? Did you get all the information you needed to understand the disease and its treatment? 

Getting the diagnosis was a relief because, before, everything was blamed on psychosomatics and even my family and friends were almost convinced... 

I didn't know anything about this disease. I only knew its cousin, rheumatoid arthritis. The staff at the Tours University Hospital were great! 

Right away I started therapeutic education, which helps patients to understand their illnesses, to learn how to give themselves injections, to be able to talk about their worries, etc.

What impact has AS had on your personal and professional life? 

The illness took a lot out of me... too much, I would say, in retrospect... First, I lost my job and then my housing because I had a flat provided by my company. Then I went to court with my former employer. 

Then I quickly lost my self-confidence because of the intense treatments... I gained 20kg. I then separated from my son's father; we had been together since high school. And, finally, my entire family started to distance themselves because the disease and the disability made them run away... all this in less than 2 years... 

Has your relationship with your friends and family changed since your diagnosis? Are you able to talk openly about the disease? Do they understand it? Do you feel supported?

For the first few years it scared everyone away. I tried to make people understand what I had, but no one saw it as something serious because I continued to laugh, smile, put on make-up... 

I held on until 2015, when I started to have heart problems (it's rare, but it happens with AS). 

My treatments had to be stopped as they were no longer compatible and then it started going downhill from there. None of the treatments worked on the disease anymore. I was truly suffering... The morphine-based drugs were doubled or even tripled... 

Then, the loss of my independence finished me off... The arrival of the wheelchair... I thought I had accepted the disease for a long time and then I realised that no, it was a delusion... 

My mother saw me arrive in a wheelchair and it was a shock to her... It took a lot to realize that what I had was not "nothing"... In my family, it's hard to talk about feelings... 

Lately, it's my life that's been at stake and that hasn't changed anything, unfortunately I think that's how you have to live, I've stopped chasing people. The problem is that people don't understand that you only have one life and that it's not once the person is gone that you should have regrets... Enjoy the people you love! 

You're active on social media. Why did you decide to talk about ankylosing spondylitis on the internet? What topics do you cover?  

I started in 2014/2015 on Facebook (in French) by creating "Spondylarthrite Ankylosante au quotidien: Journal d'une Spondy" ("Ankylosing Spondylitis in Daily Life: Diary of a Spondy") and then I started to create a YouTube channel with the same name to talk about topics such as: "Illness and loved ones", "How to complete an MDPH* file"... All this because, when I was diagnosed, I absolutely wanted to understand what my daily life, my future, etc. would be like. However, I often found myself on 100% medical websites with language that was not adapted to people with no medical knowledge... 

*The MDPH is the French equivalent of the Disability and Carers Service in the UK.

So, I used my professional skills and my contacts in the health field to create an account where we could talk normally and honestly. I realised that for many patients, the doctors did not talk to them about the consequences of this disease or, sometimes, they'd take things lightly... 

Then, when I started on Instagram, I developed the name of the account into "Journal d'une spondy: les chroniques du quotidien" ("Diary of a spondy: Daily chronicles"). The word "chronic" was for the chronic illness aspect because I quickly realised through my experience, but also through those of my followers, that there were a lot of us who had several chronic illnesses and that, inevitably, by talking to each other, we recognised ourselves in this or that illness. 

Since 2019, my account is for people with ankylosing spondylitis but also Crohn's disease, ulcerative colitis, Ehlers Danlos syndrome, psoriasis, rheumatoid arthritis, lupus and all other chronic illnesses. 

What were your conclusions before starting your social media profiles? Were patients lacking any essential information about AS?

To tell the truth, there were forums on Facebook, but they were all over the place. I have a lot of trouble with this kind of unsupervised group, where people say, "I hear that..." and "they say that...". The rest, unfortunately, was 100% medical with a lot of complex words and the absence of the human touch or aspect behind these descriptions. 

There were also the pages/accounts of top athletes, influencers, super mums, all suffering from the same disease but reflecting a watered-down image of the disease, sharing only the positive and never the flare ups, side effects of treatments, etc. 

The result? As humans we tend to compare ourselves and this ended up depressing me. I was clearly thinking that I must be rubbish compared to all these very happy people with a positive attitude 24/7...

Clearly, it lacked the reality and the truth of things, and that is what most patients are looking for! 

What feedback do you get from your followers? Do you hear others' stories? What do you and your community think is the most difficult part of managing ankylosing spondylitis on a daily basis? 

I receive messages every day thanking me for putting a smile on someone's face or just for taking the time to chat or give advice. But I also thank my followers for being there and for trusting me for all these years! 

Of course, my account doesn't have 10,000 followers, because my posts are necessarily focused on anecdotes and descriptions of chronic illnesses... But the main thing is that this account is helpful and continues to help patients on a daily basis to put together their applications for disability benefits, to tell their loved ones about their illness, to understand what their illness is in all honesty. 

In everyday life, as I often say, it is often others who are our biggest handicap.  

Because we have so-called "invisible illnesses", we are not "credible" as a person with a disability. We are subjected to remarks, insults, mockery, discrimination and having to justify everything is very exhausting!  

So much so that we are "embarrassed" to have to show our disability card for the disabled checkout at the shops and that many people no longer dare to park in disabled spaces in the carpark even though we have a Blue Badge... All this because of the silliness of certain people...  

Then there are the not-so-cool aspects of the disease, i.e. the morning stiffness which can last up to 2 hours. This means that we have to get up several hours before everyone else so that we can get dressed, move, etc.  

There is also the whole social side that we can lose by refusing invitations in the evening because, for us, this is when inflammation is at its worst...  

How are you today? What are your plans for the future? 

In the past few months, my health has deteriorated rapidly, I was discovered to have another autoimmune disease: lupus. 

With time and with all the conditions I've developed, I've learned to live from day to day. But in any case, I have decided to live and do what makes me feel good and happy. I'm working on my artistic side, which is what calms me (drawing, like any manual and creative activity, can have a real positive impact on this kind of illness).  

Finally, what advice would you share with other Carenity members living with ankylosing spondylitis? 

First, we know our bodies inside out, so if you feel something is wrong, see your doctor! 

Second, if you don't feel listened to, or if your pain is being made fun of, change doctors! 

Having AS means having chronic pain, but over time you get to know what is good for you and what is not, so never force yourself to do something to "please" someone else!

Being chronically ill may require accommodations, but it is possible to retrain and change career paths if your job is no longer suitable. Life is not over, it's just a turn of the page! 

Any final thoughts? 

Lately, I've to face bad attitudes from doctors that deeply hurt me and, by talking with my followers, I also realised that many of us have suffered from medical maltreatment. That's why I'm collecting as many stories as possible to create a post and then a video to raise awareness, especially when we know that diagnostic delay can go on for more than 10 years... 

Don't hesitate to join us on Instagram!  

Many thanks to Céline for sharing her story with us on Carenity! 

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