Ankylosing spondylitis: "Writing makes me forget the pain"
Published 22 Dec 2021 • By Candice Salomé
Anna, author of children's stories and known as annacadabra_author on social media, has ankylosing spondylitis. Diagnosed 10 years after her first symptoms, she looks back on her journey and her lengthy period of trying to get a diagnosis. She has published her "Journal d’une nana de 36 ans atteinte de spondylarthrite ankylosante" ("Diary of a 36 year old bird with ankylosing spondylitis") where she writes about her pain, fears and anxieties but also her joys. She shares her story on Carenity!
Discover her story below!
Hello Anna, thank you for agreeing to share your story with us on Carenity!
First of all, could you tell us a little bit about yourself?
Hello, I'm Anna Tabone, I'm 38 years old and I'm in a relationship without children (for the moment). I am a librarian and author of several books. I like to travel.
When were you diagnosed with ankylosing spondylitis? What prompted you to seek help? What were your initial symptoms?
I was diagnosed in 2007. I had pain in my hips and then repeated bouts of sciatica which prevented me from walking properly. I went to the doctor because I couldn't live any more like that. I also have moderate deafness.
How long did it take to get the diagnosis?
I was diagnosed 10 years after my first symptoms. I changed doctors five times, MRIs, X-rays, blood tests...
How did you feel when you received the news of your diagnosis?
I thought the sky had fallen. It was the end of the world. I was a bit depressed. I didn't know about this disease until I was fully involved and immersed in it. I got the information from the doctors, but you tend to look on the net too...
How has ankylosing spondylitis impacted your personal and professional life?
I was working in a factory, and then I found myself unemployed. I left my family home very late because I didn't have enough money. I do odd jobs 20 hours a week, before that I was an extra-curricular activity leader for children 9 hours a week. You don't get very far on these salaries. And they are never permanent. It's very hard professionally.
On the personal side, I'm lucky to have found a good person who accepts me with my illness.
Are you able to talk freely about your condition? Do you feel supported by your friends and family?
I am lucky to have a good family who has always helped me financially. I'm lucky to be well surrounded by friends and family, fortunately. Talking about the disease every day can be tiring... You don't necessarily feel understood. Everyone has their own health problems that are more or less severe than my own.
You are an author and write children's stories. You have also written about your life with ankylosing spondylitis. Can you tell us about it? Why did you decide to write about the disease?
I have always loved reading and writing since I was very young. When I was ill with AS, I started writing children's stories. There was an outpouring of solidarity from family, friends and strangers.
I donated part of the profits to the AFS (the French Association for Spondyloarthritis) when my first book came out: "Les contes d'AnnaCadabra" (The Stories of AnnaCadabra).
Afterwards, I wrote a diary in which I tell my story: "Journal d’une nana de 36 ans atteinte de spondylarthrite ankylosante" ("Diary of a 36 year old bird with ankylosing spondylitis")
You know, a lot of times people talk a lot about chronic conditions but they don't know anything because they haven't lived it. So, in my own way, I let myself go in this diary that talks about AS, about my daily life... I even translated it into Italian.
What do you get out of sharing your story? What messages do you want to share through your book?
Writing makes me forget the pain through my imagination. It makes me feel good to have a purpose, to do what I love. I've had a lot of positive feedback on the diary. Many people with AS have recognised themselves in it. Same journey, same judgements...I've had thanks and encouragement.
You're also active on social media. Do you talk about ankylosing spondylitis there? Are you able to find support? Do you think you're able to give support to your followers as well?
I'm active on social media under the name annacadabra_auteure.
I used to talk a lot about the disease. Now, I prefer to put my writing work more in the limelight, to help make ends meet.
I'm a volunteer at the AFS so if followers want to talk about AS, I never refuse. Member or not. We help each other with advice, encouragement and feeling understood.
How are you doing today? What are your plans for the future?
At the moment I'm trying to move forward, making sure that the AS doesn't take up too much space in my life. I would like to continue writing and find a publishing house. Also to have children and a permanent job.
Finally, what advice would you share with other Carenity members living with ankylosing spondylitis?
For Carenity members, don't lose hope, do what you love, move forward even if it's hard. We are all warriors in our own way. Strength and courage to all.
A final word?
I would like to thank Carenity for contacting me, it feels good to feel important. Thank you.
Many thanks to any for sharing her story with us on Carenity!
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