I only really noticed my own scoliosis symptoms when my daughter was in a rehabilitation program

I’ve needed more and more physical therapy over the last few decades. At first, I probably needed treatment every three years or so. I can’t manage without it anymore. Looking back, I’d say that if you already have other injuries or can’t take much strain, like with me and the scoliosis, other strains will have a more severe effect.

I developed very bad back pain in my mid 40s. I tried to do exercises at home to stay mobile, but sometimes I felt 20 years older than I actually was. That limited what I could do in daily life, was hard to deal with mentally, and made me feel quite down.

When I get up in the morning, and after long car journeys, my back and neck hurt so much that I can’t stand up straight at first. And if I've been watching TV for a while and then get up, I hobble hunched over for the first 10 feet before I can properly straighten up. Exercise helps. I always feel like I have to stretch out to my normal body size first.

My daughter also has scoliosis, diagnosed when she was nine years old. And I can clearly see how the back brace helps her. Even though she had a huge growth spurt in the last couple of years, her scoliosis has got better.

There are pros and cons to us both having scoliosis. On the one hand, it’s helpful for her to see that starting my treatment late resulted in severe pain. That motivates her to keep wearing her back brace.

On the other hand, she’s convinced that she’ll have severe pain when she’s older, like me. That then means that she doesn't do the physical therapy, for example, because she says it won't make a difference anyway. She says she would rather enjoy her life now. It’s great that she isn't in any pain, of course. But that means she hardly notices her scoliosis. And then she doesn't take her treatment very seriously.

My daughter's first scoliosis rehabilitation program was an eye-opener for me. It was the first time I really looked into my own scoliosis and understood a lot of the symptoms better.

It was mainly the little things that made me aware of my own scoliosis. For instance, I hadn’t realized that the reason why my clothes were always lopsided was because my spine itself was lopsided. I had always been baffled when I bought jeans and the seam on the leg was crooked, or my blazers had a crooked seam, too.

Only when my daughter went to a rehabilitation program, when I was 50, did I realize that it was because of me and not because the trousers and tops weren't sewn properly. When I was there I saw lots of people with lopsided jackets. They then examined me there and confirmed that I had scoliosis.

I first heard about the special ‘Schroth’ physical therapy for scoliosis patients at the rehabilitation program. Scoliosis doesn’t only mean your spine bends to the left or right... it is also twisted. The ‘Schroth’ method tries to “untwist” it using active muscle strengthening and breathing exercises.

You can picture it as a kind of 3D stretching using your muscle strength. It's hard work, using lots of objects like bean bags as weights. Your body position is important. You sometimes have to lie down in a very particular way on your side, front or back. It’s quite intense.

My daughter had rehabilitation programs every year because she was under 18. Adults can generally go to a rehabilitation program every three years. In the other years, I went to the rehabilitation program with my daughter but covered my own costs myself. It’s a lot of money, but it's really worth it. Other people spend the money on a vacation.

But that kind of rehabilitation program with Schroth therapy is hard work. It’s not exactly a spa holiday. You do get a massage once a week and two breathing therapy sessions, and sometimes progressive muscle relaxation too. But the rest is physical therapy on your own or in a group, and a stabilization training group. So, it’s a full-on program from 8 a.m. til 5 p.m. every day.

I trust my physical therapist at home. She also uses the Schroth method. Because of my other orthopedic issues, she combines normal physical therapy with the Schroth and scoliosis therapy.

A normal physical therapist who doesn't work with scoliosis patients will tell you to stand up straight or sit up straight. But when you have scoliosis, you have no feel for sitting or standing up straight. At the rehabilitation clinic I saw myself in the mirror and noticed that I'm only 'straight' when I lean to the left a little. You think you're bolt upright, but you’re actually totally lopsided.

I also go to a gym, mainly to build up my muscles. I then make sure I train one side more than the other. I learned a lot about that in the rehabilitation programs and now apply it myself.

There were two other major gains from the rehabilitation program: I saw a pain management specialist for the first time in my life. The symptoms and pain had become chronic after so many years.

And I was told that I could apply for a disability ID card because of the scoliosis. I had no idea. I always thought disability meant being in a wheelchair, blind, or another severe impairment. I had never thought scoliosis would count. I’ve now been certified as having a 30 percent disability because of the scoliosis and the chronic pain.

As a result of my chronic pain, I can block out physical symptoms and don’t pay proper attention to my body. I once scalded myself when making tea and only realized much later that I had a huge blister.

Having blood taken or doing a Covid nasal test don’t bother me at all, either. There are advantages to that. You just get on with things and don’t focus so much on the negatives.

But the downside is that you don’t notice certain things at all. I once had an encapsulated hematoma and severe pain after a cycling accident. But I didn’t go to the doctor. I thought it was just normal or caused by my pain memory again. My pain specialist had to encourage me to go and see the doctors again.

I'm no longer really sure whether the pain I feel is "proper" physical pain or psychosomatic. I can’t trust my own perception of pain anymore. I used to think I had a disease that nobody had spotted yet, like fibromyalgia or an auto-immune disease.

I was really surprised when they told me it was psychosomatic too. As if I was imagining it. But they explained that the psychological elements aren't imagined, either. There is such a thing as pain memory. But it’s very difficult to accept that in our society, where things have to be seen to be believed.

I found out about our local support group because of a scoliosis day in a hospital. My daughter and I were due to have a full-body spinal x-ray where the Cobb angle is supposed to be measured especially accurately. I asked the support group what they thought about that x-ray method. I was very impressed by the national association’s work and wanted to take a political stand for people with scoliosis and other spinal deformities.

The support group also helped my daughter a lot. One doctor had told her that she didn’t need to wear a back brace or go to the rehabilitation programs anymore even though she was still growing, and we were a little unsettled by that. The support group recommended getting a second opinion. That was very important for us.

The support group put on regular weekend events with talks about scoliosis. It was a great way to get up to speed with the latest scientific findings. And it was generally good to share our experiences and support each other. The group also has a good network and can often recommend specialized doctors, like my pain management specialist.

Yes, the symptoms have certainly taken a toll on me. I’m actually a disciplined and very active person. I’ve always taken care of my friendships and hobbies alongside my work and kids. But over time, I was feeling the strain more. I couldn’t keep up with everything and started to withdraw.

Back in the day, I was that person who would be on the board of the women’s club or took on a position on the PTA. But then I really started to step things down. Lots of friends didn't understand why I had changed so much.

I also slowed things down a bit at work. I had a managerial position in the health care sector, but then changed jobs to an institute and only worked half days. And reduced the number of volunteering positions to a manageable amount.

I definitely wish I could have gone to a rehabilitation program when I was younger. That would have helped me to find the right treatments much sooner. And maybe I wouldn’t have ended up with this chronic pain and the psychological stress. Who knows?