Degenerative disc disease, a disabling disease that disrupts daily life
3 Apr 2019 • 5 comments
Noémie is 23 years old and is a member of Carenity in France. She suffers from back problems called degenerative disc disease. The disease is not pathological for all patients, so it is often trivialized. But for her, everyday life is strongly impacted.
Hello Noémie, can you introduce yourself?
Hello ! I am 23 years old. I am a person full of joy and also a little crazy, I love laughing, talking, I am a real chatterbox and I never stay inactive for very long. I am also a sensitive person and sometimes I take things to heart. I am a normal person with qualities and flaws.
When did your back problems start?
My back problems started at the age of 13. I have never had scoliosis, but I have always been sensitive to it because my father also has back problems.
Several factors come into play: I was carrying heavy things (shopping to help my parents, cement bags when I was helping my father with tinkering) and I experienced violent shocks: one in judo, the other when I fell from a hammock. My breathing was cut off and I had pain for several days.
My symptoms seemed to be like menstrual pain but were localized in my lower back, a feeling of tightness and as if my back was being crushed. It was unbearable but it wasn't as frequent as it is now.
Were you quickly taken care of?
Yes, I think that when you're young, you're better taken care of. Appointments with specialists are more accessible and finding a physiotherapist is easier. With my parents, I saw specialists who diagnosed me with spondylolisthesis with a slip. I wore a corset for a year, first 24 hours a day, then only during the day. An operation was considered once my growth was over, but a second opinion discouraged us because the results were not necessarily conclusive.
I then followed physiotherapy sessions that advised me to go swimming and cycling. I was exempted from all jolting or violent sports played at school. Looking back, I have the impression that the treatments I have been offered are those offered to all patients who come for back problems. It is the disease of the century that is unfortunately too quickly trivialized.
Your back problems then got worse.
I started working in oncology at the age of 19 with three hours of transport a day. After a year and a half, I wanted to take a break. I worked as a saleswoman and cashier: back problems have only increased. After a while, I missed the medical community and successfully applied for a position as a post-care and rehabilitation assistant. Given the workload and lack of staff, I did not spare myself and my back problems quickly caught up with me.
There is not a day in my life when I don't have any pain, but I live with it and there are some that I've gotten used to. My symptoms are pains that gs from my lower back to my legs. I feel crushed, my legs are heavy and the pain is intense.
Do you feel that you are being taken seriously enough by health professionals?
For many professionals, back problems are not a priority. I even met a rheumatologist who asked me why I came to see her when I was walking like a 90-year-old grandmother. I found her inhuman and insensitive. She manipulated me in all directions, she applied pressure to my legs to stretch them and hung at my feet to test their strength. I told her it hurt and she told me that she was not there to take care of the pain. Finally, she looked at my x-rays and said she didn't see anything. She said I had nothing, but she still admitted that I was very handicapped... Her solution? "A little pool and you're good." I came out more broken than ever physically and psychologically.
I questioned myself, I said to myself that maybe I did not have anything. When another doctor confirmed they saw nothing on the x-rays, I thought I was going crazy. Then I saw another specialist. The consultation lasted 10 minutes. He checked me and told me that I had scoliosis, slippage, pelvic tilt and degenerative disc disease.
Does your pathology have an impact on your social life?
Of course, this problem has had an impact on my social life. When I know I'm going to walk "for a long time", I take my crutch. I no longer drive, I walk very slowly, sometimes I can no longer climb the stairs alone.
I have already refused to go out or go to the cinema because it quickly becomes painful and the seat is not comfortable. I loved shopping, now I can only do a quick fitting. I have already put some articles down because there were people there and because the pain was starting to set in.
Apart from the swimming pool which is recommended (except for the breaststroke), many sports or activities are forbidden to me: horse riding, bowling, running, combat sports, ice skating, climbing too. As soon as there are tremors or shocks, I can't.
Do your family support you or do they minimize discopathy (which is not pathological for everyone)?
What is annoying is when people tell you it's not a big deal. I also liked doing things that I had to stop overnight. For example, I can no longer walk my dog who pulls too much on his leash... It's a sudden change.
As my whole life is changed, so has my boyfriend's. Some of my relatives have refused to say that it was a disease, simply because it is difficult to use that term when it is a condition that is not visible.
"There are worse things than you" is the kind of boat phrases I've heard before... But there are also better things than me at 23! It is easy for them to say that because they do not live with me and are not confronted with all the changes and concerns that this problem generates. They are not the ones who are in pain when they cook or sweep... I don't want people to feel sorry for me, but I just want people to recognize a problem when it is a problem. That doesn't make me another person; I'm me with a problem. I have to anticipate and be careful every day to reduce the pain as much as possible.
How could we better help patients suffering from disc disease?
For people suffering from this pathology, we should tell them that certain steps take time and that even if we can no longer do certain things that we used to do, we must look for other areas of interest. Even if it's not easy and even if at times, you can't resist, you have to be happy and enjoy all the little moments that life offers you.
And when we're old, everyone will have more or less back problems... we just have a slight lead!
What advice would you give to a newly diagnosed patient?
If a patient has just been diagnosed, especially if he or she remains positive and cannot find support, do not hesitate to talk to a professional about it. We must look for leisure activities that are feasible and that allow us to take our minds off things. Above all, anticipate the slightest action that can be taken to reduce pain as much as possible.
Thank you very much to Noémie for sharing your story. And you, do you have back pain? How do people around you react and how do you treat yourself?