Join Laetitia as she talks about her journey living with EDS, Chrons Disease, Dysautonomia, general anxiety, and fibromyalgia. Please be respectful of her and her journey.
Learn about EDS https://ehlers-danlos.com/eds-types/
Dysautonomia information can be found here http://www.dysautonomiainternational.org
Information on fibromyalgia can be found here http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243
Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health?
My name is Laetitia, I’m 27, almost 28. I’m married. I was born and live all my life in the South-East of France (so, sorry for my english).
My diagnosis? Ehlers-Danlos (probably hypermobile) and all the associated symptoms (lots of allergies, dysautomia, scoliosis and so on), Crohns disease, general anxiety and fibromyalgia.
When did life change for you?
In 2011. I had more and more pain all over my body, diarrhea all the time. I knew something was changing. I felt that the “healthy” life was over.
What was life like before diagnosis?
As a child and teen, I was quickly tired. I had lots of bruises and poor balance. I fell often. Asthma. I’ve already had lots of food allergies and intolerance. Lots of digestive problems. But I was very active.
At 12, my left knee was very painful. They said “it moves, don’t worry”.
As a teen and young adult, I wasn’t aware about my hypermobility. I’m thinking it’s fun but normal.
At the university, I was more and more tired. I didn’t want to go out at night. I was sick often.
During my PhD (started in 2011), it was worse. Some days, I can’t move but I have to. My family and I were worried. What was the point with my digestive system? With my body and my joints?
For my Crohn, it took almost one year for having a diagnosis (2012). But for my EDS it was another story. In 2012, I was diagnosed with ankylosing spondylitis and I take a treatment for that. But I saw no change and I can’t walk anymore. So I decided to get a cane even if my RI didn’t want to. I can walk.
Years after years, I knew that my AS diagnosis was wrong. My joints dislocated more and more. My pain didn’t match with AS. Something was wrong.
Last year, in 2016, after lots of research, I was going to a very old RI. He thought I might have multiple sclerosis or a neurological problem. I did lots of exams. Again. It’s not that but he confirmed I don’t have AS.
So, I found an EDS specialist in my city. And, at the first appointment, it was obvious for him: I have EDS. My diagnosis battle was finally over.
How has your diagnosis changed your life?
I was sad ’cause having several chronic illnesses wasn’t a good new. However, it was a relief ’cause I can put a name on my symptoms. I know what I have and I can learn to live with.
The EDS specialist prescribed me compression clothes, splints for my finger joints, oxygen and a new pillow.
I bought 4 canes to match with my clothes.
I sold my high heels shoes.
I get the disabled status.
I had to stop working (it was very hard but I have to).
I accept that I need help for my day routine. Fortunally, I have a wonderful husband.
I learn to take care of myself.
We move in another home, ’cause the stairs were killing me.
Please describe the best you can a day in the life of you?
On my best day, I can go shopping with my mom (with my cane) for some hours even if I pay it back for two days. Moreover, I can do some cooking or the laundry. I’m always afraid about the diminution of the number of “best day”.
What was/is the most challenging thing you have faced because of your diagnosis?
My appearance was changing (no more high heels, compression clothes, bruises and so on …) and can’t work anymore. I have a PhD and I’ll never use it anymore.
Do you find that you can keep up with others?
It’s hard, but, I have two marvelous best friends. I can text them “I dislocate my hip, I’ll be late.” without problem or shame. I’m very lucky.
However, with unknown people, it’s very difficult for me.
What would you tell others living with your diagnosis?
Don’t be ashamed. Having a cane and/or a wheelchair is not your fault. You can be pretty and good looking even if you are disabled.
Your pain is real, so take care of you, please.
What would you like to tell others that don’t live with a similar diagnosis?
I’m NOT too young to be disabled. I’m not lazy, I’m a warrior ’cause I live with chronic pain and several chronic illnesses.
What have you learnt on your journey?
I’m stronger than I thought.
Medical errors are a burden.
Even with my disabilities, I can be happy.
Is there anything you would like to add about your journey?
My life is very different that what I imagine when I was younger; but it’s okay. Once I accepted it, it was easier.
Thank you Laetitea for sharing your story with me and the world.