- Ankylosing Spondylitis
- Interviews
Laeti's interview
How did all start?
Some chronic random pain on different part of the body. Then a lower back pain becoming more and more chronic, to a point I had to adjust things like not being able to lie on my belly, or stretch anymore as I used too,... I had no idea it could have been inflammatory. Then I also started to notice a constant fatigue, waking up during the night with pain, then I had problems walking and getting out of bed.
Do you already have a diagnosis? How long did it take you to get it?
Yes, thankfully. From the moment I did go to the doctor and very quickly got my first MRI because of to unbearable pain due to a little accident, it took about 10 months.
What has been the most useful thing for you so far?
Stay active!... combined with anti-inflammatory, but I am now at a place that I am considering the biologics.
What have been your biggest difficulties?
That during the period of misdiagnosis because I actually also have an herniated disc, the care for my symptoms were not the appropriated one for Ankylosing Spondylitis, therefore the immobilization very quickly made everything worst and hard to get back ... Wrong diagnose was a tough one I would say!
How has your social and family environment reacted? Have your social or family relationships changed?
It has been a difficult time, especially before the diagnose, many people did not understand why I was making such a big deal of a back pain... one the diagnose, I received a lot of support, kindness, help and apologies. People realized that they had been minimizing something that was pretty bad...
But sadly I also had some people who just became very cold, suddenly I am not the strong woman I used to be, and also they think that this condition doesn't really disable and therefore I am being judge for how I live with it.
That's sad ...
What things have you stopped doing?
For a while I stopped almost everything unfortunately, but luckily I am getting everything back and hopefully won't really stop anything for years. But for now a lot of things are still very difficult, even reading a book as simple as it might sound.
What do you think about the future?
I have a lot of hope! And I know they are a lot of wonderful people out there are trying to do all they can to find a cure and understand better and better our condition. They are helping us having a better quality life and less damage through the knowledge being discovered around this condition. I also imagine a better understanding from the public as there is more and more awareness being raised around AS.
I wish though that every country would have a support group and more early diagnose.
So far, which years have been the best years in your life? What have you done during them?
:) All of them! I am very grateful for everyday and I am glad and thankful I got to realized so many dreams, like cycling around the World. But more than anything that I do the choice to live the life I love...
What would you like to do if you didn’t have your condition?
Everything I do but more and with more energy!
Also I would have loved to continue to be a guide, do any kind of jobs that I feel like and also a job helping others which can ask physical strength that I don't feel I have yet anymore.
But who knows :) maybe everything will be possible with the right treatment, or the right opportunities.
If you had to describe your life in a sentence, what would it be?
My name means Joy in Latin and I believe I honor it :)
Finally, what advice would you give to a person in a similar situation?
Never stop... and every step counts. One day at a time and to remember that we never know of what tomorrow will be made. That having dreams is the only way to create them and walk on path to get there. So keep on fighting for what you like, to feel alive and I would say, the day they feel like doing nothing to do a bit more and the day the feel like doing so much to do a bit less ;)
