Degenerative disc disease, a disabling disease that disrupts daily life
Apr 3, 2019 • 2 comments
Noémie is 23 years old and is a member of Carenity 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 and 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 age 13. I have never had scoliosis, but I have always been sensitive to it because my father also has back problems.
Several factors for me came into play: I was carrying heavy things (shopping to help my parents, cement bags when I was helping my father with repairing things) and I experienced violent shooting pain: 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 more like menstrual pain but were localized to 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 physical therapist is easier. With my parents, I saw specialists who diagnosed me with spondylolisthesis (a slipping of vertebra). I wore a corset for a year; first 24 hours a day, then only during the day. An operation was considered once I finished growing, but a second opinion discouraged us because the results were not a certain to be a good outcome.
I then continued physicla therapy sessions, which the physical therapist advised me to begin swimming and cycling. I was not permitted to participate in sports or activities that involved any jolting or violence. 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.
And 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 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 go 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 taken seriously enough by health professionals?
For many (medical) 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 to be 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 seats are not comfortable. I loved shopping, but now I can only do a quick shop to try something on. Sometimes it is to the point where I end up just putting the clothes down because there are people there waiting to try the clothes on, so I must wait, and my pain begins to really set in.
Apart from the swimming pool which is recommended (except for the breaststroke), many sports or activities are off limites for me: horse riding, bowling, running, combat sports, ice skating, and climbing too. As soon as there are tremors or shocks, I can't.
Does your family support you or do they minimize your discopathy (which is not pathological for everyone)?
Discopathy is a disease which affects the intervertebral discs in the spine.
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 people experiencing worse things than you are" is the kind of phrases I've heard before... But there are also those people experiencing better things than me at 23! It is easy for them to say that because they do not live in my body or with me and are not confronted with all the changes and concerns that this pain and 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 progress 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 of things and the pain. Above all, anticipate what you can do in your day or activities that you can take proactively to reduce the pain as much as possible.
Thank you very much to Noémie for sharing her story.
Do you have back pain? How do people around you react and how do you treat yourself?