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Independence and MS

Independence. What a great word. If you take a look on Wikipedia or in an encyclopedia you can find lots of different definitions. Some people say independence means things like having a regular monthly budget which is enough to pay all bills, a good job, family, good health, the freedom to travel, to have a social life, maybe some luxury things like nice cars or clothes. Others talk about human rights, freedom and the right to say their opinion.

Independence has another meaning for people living with chronic diseases. Some of them need more care and assistance, others are not able to walk. Some of them loose their job and others have to fight for their rights.

As I was diagnosed with MS, things started to change. At first, they were not very visible. They were small changes. I was not able to do a long distance walk for as long a time, MS needed lots of my energy and I was exhausted more quickly than usual. My space was limited and changed for a while after coming out of my first big relapse. I learnt a lot and it was time to think about my personal independence.

I had to change my priorities. There is one important point for everyone, no matter if you have a disease or not: monthly income. You have to pay your bills. But now there is this independence thing: living with MS means very often reducing working time. This means less income or you might even have to change job.

Another important point is preparing for aging. What will happen when I am in my sixties or seventies when I want to retire? Will there be enough money? I try to do as much to prepare as possible, but this is still a question for me because not everything is possible anymore now that I have MS. The question is: will my independence be limited again and more when I am older?

When you ask people living with MS about their social life, you can see that some of them do not feel very independent. Because they don’t have a social life, they live socially isolated. In my community, I often see how lonely people feel. MS makes them unable to be in touch regularly with other people. Or other people leave them, because of MS. It makes them scared and they have lots of misconceptions or think you are unable to have fun or have a good time.

Independence for me means also to have fun. To laugh, to feel positive. This has a huge positive impact in a life with MS. I once talked with a nice lady, also living with the illness, about what positivity means for her and she agreed; the more positive things that are in your life, the more you feel better and your independence grows. She had started to ride a tricycle because she is not very well balanced but wanted to leave the house and be outside to see nature and feel the sunshine or the rain. “My tricycle is the best thing I have, I can go out whenever I want, I have a nice workout and can take nice tours around the area without assistance. This is independence for me“, she said.

Independence seems to be a little bit smaller for people with MS. Small, simple things are just as important to be independent as the huge ones. An example comes from the area of artificial intelligence (AI), something that I was introduced to at a congress I visited this year. Professor Sami Haddadin is an expert in robotics and he designs robots to assist older or handicapped people. At the Congress, he talked about a woman who was paralyzed from the neck down, unable to do anything without an assistant. She received a robotic arm which used AI technology and it helps her to drink without an assistant. This piece of technology gives that lady her independence. In my personal opinion, these future technologies can have a positive effect on people living with diseases and their independence. And these solutions are not so far away.

Independence is, and this is what I’ve learnt during my research, not always the big things. For me it means to be able to go for a walk, to see nature. I feel independent when I am writing articles like this and doing something for myself. Being friendly to myself. For lots of people it is the ability to buy good food, others see their wheelchair as independence because it helps them to move. For people who have to stay in bed, a computer connected to the internet can bring independence. To see friends and to have the opportunity to be heard as a person, not as a patient can be independence too.

Independence for many people is highly valuable. But the definition can be completely different. What does it mean for you?

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