Osteoarthritis: "After sixteen years of suffering, I can finally live a normal life!"

Hello Marie-Eugénie, thank you for agreeing to share your story with us on Carenity.

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

Hello, my name is Marie-Eugénie, and I am a 35-year-old woman who will finally be able to live a normal life after 16 years of physical and mental suffering.

Photo courtesy of Marie-Eugénie

How did you discover that you had osteoarthritis?

After a fall down the stairs at the age of 19, I had constant pain in my knees. So, I underwent X-rays and MRI scans which revealed my osteoarthritis two years after it happened.

Were you expecting this diagnosis? How did you react?

Not at all, for me osteoarthritis was a disease for the elderly. I used to work in a retirement home, so for me, osteoarthritis went hand in hand with old age! 

You were diagnosed very young. How did your doctors and family react to this early diagnosis?

I've had many doctors, the first one was really great, he suggested an osteotomy (a surgery to cut or reshape the bone) and explained that this would give me around 5-7 years of peace from the pain. It did, fortunately.

Then various surgeons and doctors explained to me that I was too young for a joint replacement, that I had to take pills and do physiotherapy for at least another 30 years. There was nothing else they could do. I was 28 years old...

Then finally, a surgeon took the trouble to do an examination that no one had decided to do before: a simple arthroscan which revealed that my bones were bare! I then underwent an almost emergency operation, I was a "medically interesting" case he said!

In short, the vast majority of doctors focused on my age instead of taking into account my physical and mental pain. 

As far as my family is concerned, they oscillate between incomprehension and guilt, especially for my parents, because it turns out this OA is congenital.

My husband and my parents have supported me through the years, but they have suffered my anger when I would have periodic "breakdowns" of anger from feeling like a constant burden to them...

How does your osteoarthritis impact your daily life? 

I now have a patellofemoral joint replacement (a partial knee replacement), and I'll undergo a second one in a few years. It's had a pretty big impact on my life: I lost my job (because of the disability) and so therefore I'm dealing with a lot of financial insecurity...

It's been a long, emotional battle too trying to fight the social security system to assert my rights and make them understand that my OA is hindering my life much more than for an elderly retired person since it keeps me from working, paying my bills, etc.

16 years later, I still haven't succeeded... Osteoarthritis is a degeneration of the cartilage but for the national health service, it is not a long-term illness...

Are you satisfied with your treatments? 

Since I got my knee replacement (in March 2015) I'm living again! I can walk for more than an hour, I can cycle again, and I have plans for my future and my career!

What advice would you give to other members living with osteoarthritis?

Don't get discouraged! That's easy for me to say, but see for yourself, one day you'll find some relief! :)

Thank you to the other Carenity members for supporting me and helping me on various discussion forums.

As I write this testimonial, my tears are flowing because I'm realising to myself that I'm coming out of a long nightmare. But I'll never forget that nothing is ever completely over.

Many thanks to Marie-Eugénie for sharing her story with us on Carenity!

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