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Birgit Bauer
Man and woman discussing life with MS in the kitchen

I was shocked when I was diagnosed with Multiple Sclerosis (MS). It was a big struggle for me to calm down and find a way forward. I had so many questions, my head was full of scary pictures of wheelchairs - the situation was totally chaotic. 

After a while, I started to do MS-driven things I thought would be helpful. I started acting like an old lady, because I thought I had to slow down due to my MS. I stopped having fun because I thought it was not good for my MS. Not noticing how foolish this was, I became too conservative, did my regular chores and then ended up on my sofa, waiting. For what? Don’t ask - I wouldn’t have been able to answer. There is one possible answer: it’s the way it ‘should’ be. You are a patient. Now you have to be silent and very modest. I took a back seat, all because of my MS. 

I didn’t like it. This was not the life I lived before my diagnosis. I was angry with myself, because my quality of life was lost, my needs were not met and it was hard every day. I was unhappy and sad. I worked, but it wasn’t me. The colorful person, having fun and a great life was gone. Lost somewhere between my first relapse and the diagnosis. It was clear for me: I had to change something so I went to a psychologist to find a way to change this scary lifestyle. 

The message was clear: Start to be proactive and advocate for yourself. 

Being proactive means making things happen, rather than waiting for them to happen to you. Be more prepared, be informed, and have a plan. Make things happen for yourself instead of waiting for things happen to you1.

The best reason to change my thinking was: it is still my life, I have to live it to its fullest and enjoy it as best as possible. It is my decision how I will deal with the situation or what I want to do or how I want to plan. It is not the job of the people around me and if they are not happy with a decision I make, so what? It’s not about them. It’s about me. 

This is a real challenge. Living with a chronic disease feels like having a second job with lots of skills you need to develop. To start with, it is a difficult thing to learn to take on. But it is worth it to become proactive. Because being proactive allows you to advocate for yourself. It allows you to care for yourself. 

Benjamin M. Greenberg, MD, MHS (Deputy Director of the MS program at the University of Texas Southwestern Medical Center in Dallas) agrees, saying: “Living with MS requires a proactive approach”2. 

So time to activate the pro! Some helpful points I worked to help me be more proactive are: 

Education: 

It is important to know as much as possible. I gather information from patient organizations, researchers and staying tuned on Twitter - if there is a MS congress, I follow their hashtag. I also stay in touch with other people living with MS and share information and knowledge. Instead of doing something when the worst case, a relapse, happens, it is better to prepare and act proactively beforehand. 

Be active for yourself – for your body and mind:

This is all about healthy living. Taking care of yourself, knowing what’s good for you and what isn’t, and asking for support at an early stage. Sometimes little things have a big, positive impact on our lives and this is also proactive in most of the cases. Mostly we do these things unconsciously, but they make us feel better. 

Learn to decide proactively: 

For me it was an adventure to change my lifestyle and also to learn to say “no”. It was clear, if I do something that I shouldn’t do, I will have to deal with the consequences. To decide that was very proactive. Because I made that decision before something happened. 

Learn something new: 

Learning keeps my “thinking headquarters” busy and helps keep my memory active3. Being active in a modern world and being connected with others is also important. 

Collect data and track your well-being / symptoms: 

Another important thing is to track my symptoms and collect data. This can be done via an app or in a notebook. It helps to inform your doctors of new symptoms and prompts you to ask important questions. Knowing what’s going on also means finding out how to change things to have a positive impact. It also helps to have a good relationship with your doctor. 

Being proactive helped me start to live with a new approach. I have a holistic overview about things and it helps me to find ways to live with MS, without letting it run my life. I am the boss of my life and I decide which way to go. And this is what we need, so don’t wait! Be proactive for yourself. It’s your life and it’s in your hands!

 

References:

  1. Vocabulary.com. Proactive. Available at: https://www.vocabulary.com/dictionary/proactive Accessed October 2020
  2. Everyday Health. 8 Ways to Stay Positive With Multiple Sclerosis. Available at: https://www.everydayhealth.com/hs/multiple-sclerosis-pictures/staying-positive-with-ms/ Accessed October 2020.
  3. Harvard Health Publishing: Harvard Medical School. Train Your Brain. Available at: https://www.health.harvard.edu/mind-and-mood/train-your-brain. Accessed October 2020.
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