Inspiring stories · Patient Focused Priorities

It was January 2005 and the doctor told me - I have MS. It was a terrible moment.

I had some bad and sad days afterwards so took time for myself. Then I noticed that something had gone wrong. I didn’t feel informed about the next steps and, although I had asked the doctors around me, it seemed that nobody was able to help. Additionally, people I knew had started to react to my news in a not so nice way.

“You have to do something”, I told myself. I started to think how I could change things. Obviously, there was nothing I could do about my diagnosis, but there was something I could change - my resilience. It became my secret superpower. My first challenge: stand up and do something so I can have a good life again.

It was a “silent revolution” in the first phase. I did lots of research across different websites and read books about MS, patient rights, communication, self-confidence and found a psychologist to support me so I could create a plan. All of these elements helped me a lot and, although I was prepared, it was still challenging to stand up for myself for the first time. It is not in our nature to say “No”, to set boundaries, ask for support or demand more. Mostly, we all want to be well-behaved and were raised to be polite, not ask for too much or be too demanding. It is inbuilt in our society and our generation – be a conformed member of society. Even now, I can hear my mother preaching to me to “be a good girl.”

But the thing is with MS, or any other chronic disease, you can’t always conform. You have to live your life as well as you can, and if there are extraordinary steps you need to take, they aren’t bad – they’re necessary.

Having MS makes me an extraordinary person and so it is ok for me to demand more than others or do things differently. Alongside this, I shouldn’t be ashamed to ask for some extra support. It is my right, why should I suffer more than necessary?

With my psychologist I learned that there is a difference between being clear about your needs and speaking up for yourself, and being insolent by demanding things. There is also a difference between explaining the facts clearly to people and being selfish. This was one of the allegations I endured - “You are selfish.” No, I am not. I am living with MS, so I have some special needs and I try to explain it to people how it is. This is a difference that people may have a hard time to understand in the beginning.

Some people I knew started to complain when I said “No” to things, for example when I was not able to come to a party because I didn’t feel well enough. It was hard to see these people leaving my life. But I also had to be clear with myself – a real friend or family member tries to understand the situation and asks if there is anything they can do to support you or just give you a shoulder to cry on. Good friends should be someone that you can count on. But also remember, you should also try to give back. Belonging to a good relationship is give and take.

Same with doctors, build good relationships. Be friendly but be clear in the things you say. Know your patient rights, and the facts, before you see your doctor. Be prepared and let them know what you expect. But help them too by being there on time for your appointments and, if they need you to do some paperwork, do it and give them what they need. Make their lives a bit easier and they will give that back to you in other ways.

The other thing is to listen. Living with a disease, you soon learn to listen and look at the holistic picture and then don’t complain - look for solutions instead. Others may call it a problem, but it isn’t, it’s more a question you have to find an answer for. Together with your doctor. You don’t have to be their best friend, but a good relationship can help to reach those solutions a bit easier - and faster! Believe me you will find ways, probably a bit extraordinary, but ways that work for you.

Last but not least, in the beginning I mentioned my secret superpower: Resilience.

We all possess resilience. But very often we are not conscious about it. Resilience is a very positive power, and you can train it. Your mindset can be your own “little helper” to remind yourself of your strength and self-confidence. My mindset reminds me to be more accepting - there are situations in life you will not be able to change. So, accept it. And move forward. You can rely on your new superpower to survive any of those moments in life.

Inspired to Demand More from your life with MS? Create your own Talk to Your Doctor Guide to help communicate your priorities to your neurologist at your next appointment.