Disability acceptance

I was optimistic about my life before my disability. Nothing seemed too crazy. I had a job I enjoyed, a husband, three children, and a life filled with many activities.

The complaints started in 2017 when I began to walk unsteadily, felt tired, and my balance was not always good. I went to the doctor, who attributed it to being too busy and advised me to take it easy. After all, I was 40 and things tend to slow down a bit at that age. A few weeks later, I went back to the doctor because there were no improvements. By then, I had already done some research (given my background as a nurse) and concluded that I had Multiple Sclerosis (MS). The doctor referred me to a neurologist, who confirmed the diagnosis after an MRI. At that moment, it felt like the ground was literally slipping from under me. I could only think about how I would climb the stairs in our newly built house and how long it would take before I ended up in a wheelchair.

The neurologist tried to reassure me, stating that not all MS patients end up in a wheelchair and that there are effective medications available. I needed time to process this information and returned for further appointments a few weeks later. During those weeks at home, denial played a significant role in my thoughts. I convinced myself that nothing was wrong with me and that the neurologist had made a mistake. After all, he was young and had just graduated, so what did he know?

A few weeks later, I returned for a consultation, completely in denial. I remember very well saying to people around me, ‘If this is it, then having Multiple Sclerosis isn’t so bad.’ The neurologist discussed medication, disability rehabilitation, blood tests, and a visit to the urologist. One moment you are healthy, and the next you are visiting all kinds of specialists in hospitals. Wherever I went, I kept insisting that it wasn’t necessary and that I would make an appointment when needed. This went on for at least two years.

I resisted giving in to Multiple Sclerosis

In the meantime, I attended psychotherapy and physiotherapy for mental and physical support. The professionals pointed out that the more I resisted the diagnosis, the harder I fought, the more I would deteriorate. They recommended that I begin using mobility aids to conserve energy, allowing me to have more energy for enjoyable activities with my family. However, this was not an option for me. I was not going to walk with a rollator (this was for the elderly), I was not going to sit in a wheelchair, and I certainly was not going to use a mobility scooter. If I were to do this, I would give in to MS, and I didn’t want that. MS had no control over me. I was a fighter, not a quitter.

The medication brought more side effects than benefits. From the start of the diagnosis, I researched stem cell transplants for stopping Multiple Sclerosis progression and decided to pursue it in 2021 in Mexico. The process was intense, and the subsequent rehabilitation was even tougher. I had to rebuild everything from scratch. All the strength in my legs and arms was gone, my immune system had reached zero, and I had to work on my recovery step by step.

I remained resistant to the idea of using walking aids, even though there were times when I truly needed them. I hadn’t gone shopping in town for five years simply because I couldn’t. Walking for extended periods was challenging, and cycling was out of the question. I remember going to a mobility store with my father, and the salesman advised him to return when I was ready.

By February 2022, I had made progress, managing to walk 800 meters without any assistance. I was on an upward trend; the stem cell transplant had proven effective. I convinced myself that not using mobility aids was the right choice, as it made me exercise more. However, this couldn’t be further from the truth; I realize that now. If I had embraced the disability and mobility aids earlier, I could have saved so much energy and potentially started walking sooner.

Shame played a significant role

I worried about others’ perceptions if I used a rollator or wheelchair. My family also discouraged it. My husband was ashamed of me if I walked with a rollator or sat in a wheelchair, and my children were afraid that I would exercise less.

In March 2022, I got Covid, and the recovery I had built up in the previous months was gone. Being a fighter, I believed I could start rebuilding everything until summer when we had a vacation planned. Panic set in when the news reported massive crowds and chaos at the check-in desk and customs at Amsterdam’s airport. As we were scheduled to fly to Spain for our holiday, I didn’t know how I would manage the airport craziness, given my inability to stand or walk for extended periods.

Disability acceptance journey of a woman being diagnosed with Multiple SclerosisGiven the circumstances, I decided to rent a wheelchair, but my partner suggested that it might be better to rent a rollator instead. I felt that a rollator wouldn’t be convenient for me since I could only walk with it. However, the wheelchair available for rent was old-fashioned, so my partner took it upon himself to search online and discovered the Rollz Motion. In his opinion, it was exactly what I needed: a combination of a walker and a wheelchair. Moreover, it looked nice and modern.

The decision was made, and we got the Rollz Motion. I still didn’t want it, but I accepted it because my partner was supportive. Something shifted in my mindset – a kind of peace settled in, and I was no longer stressed. No stress at Schiphol, no stress about going on vacation. The first time I used it in public was at Schiphol, and it felt awkward to sit in it, yet wonderful. We rushed to the check-in desk and smoothly passed through customs. Even the children were delighted, asking if they could sit down occasionally, and I would push them.

Acceptance is the key

I used the Rollz Motion extensively during that vacation and no longer felt ashamed. The children adapted to it quickly, seeing it mainly as a positive thing, while my partner felt less at ease. Accepting Multiple Sclerosis was not just my struggle; it also affected my partner. Disability doesn’t impact only the person diagnosed; it affects the entire family, and everyone experiences it in their own way.

The sense of shame for using the rollator resurfaced when I had to visit my psychologist. I cried all the way from the parking lot to the hospital, overwhelmed by embarrassment. Being young with a disability, it felt like a personal failure. Upon arriving, I was angry and pushed my rollator aside. To my surprise, my psychologist smiled and expressed how proud she was of me. It took five years, but I finally embraced the use of a rollator. We discussed why I felt ashamed and why it seemed like a failure, even though it wasn’t.

You don’t have to face a chronic illness or diagnosis alone; the whole family has to deal with it. What is very difficult for the person to accept is also difficult for their partner. The partner sees their spouse change, not only physically but also mentally. Unfortunately, my husband and I are no longer together because he chose to leave. In retrospect, I now understand why the GP and specialist always asked how he was doing. You do not experience a chronic illness or diagnosis alone.

My advice is that when you receive a diagnosis, you should immediately seek therapy with a psychologist for the entire family. It may not seem necessary, but it can be crucial. Keep talking to each other, express how you feel, and share what it means to you. Communication is very important in this situation.

Those who need mobility aids must undergo a process of accepting the disease, their disability and recognizing the benefits aids can provide. Looking back, I now wish I had accepted this much sooner. They provide me with so much energy, enabling me to engage in enjoyable activities, be there for my children, and eliminate obstacles in my way.

Now, with several tools at home, I can confidently say that I’ve turned the initial shame I felt about disability and using aids into a source of pride. I openly acknowledge to the world that I use tools, and I am transparent about the fact that not every day is the same for me.

It might sound cliché, but if only I had accepted aids earlier, it would have saved me energy and reduced stress. Stress is detrimental to recovery and only worsens your health. Interestingly, after undergoing training to accept my illness, I have now become an experienced consultant on chronic illness and work.

I’m doing well… one step at a time.

Mariska van der Goot