This website is intended for a European audience and is made available by Amgen.
This website is intended for a European audience and is made available by Amgen.
It took me a very long time to come to terms with my diagnosis. My life before NMOSD was extremely busy and work took priority. I very rarely took time off and I was constantly on the move. When I was diagnosed, I tried to keep working as I had done previously, until one day, I felt so exhausted and knew that this was not sustainable.
I went to my first NMOSD rehab in 2019, and this was the first time I had some free time for myself. This is also when I realised how tired I actually was. I did all the exercises in hospital and was skipping dinners because I was overwhelmed with exhaustion and just needed to sleep.
It was around this time that I realised I was not using my energy efficiently and that resulted in more relapses which worsened my ability to walk. Things had to change but I was focusing on short-term goals and managing my condition rather than making big lifestyle changes. I was in denial.
My diagnosis was difficult for my family and friends. My parents, for example, saw a visibly healthy 40-year-old man. They couldn’t see any reason for me to be sick or needing a wheelchair and it took them a long time to accept my disease.
I struggled with both the physical and mental aspects of NMOSD and so I decided to go to a therapist but told nobody about it. Mental health, ten years ago, wasn’t something you could discuss freely and there was a lot of stigma around it; especially when it comes to men seeking help. However, I am glad I did therapy as it has given me great tools to cope with the disease, and I can now share my experience with other people who might be in a similar position.
Today, I can proudly say my life has changed for the better. I embraced change and learnt to be kinder to myself. I might not be able to motorcycle anymore, but I’ve dedicated myself to other hobbies such as photography and travelling with my wife. These are things no one can take away from me. I feel privileged to have visited many far away destinations such as Africa, Hawaii or the volcanic craters in Iceland which is one of the best experiences of my life.
NMOSD has given me a new perspective. Yes, it is a severe, debilitating condition and it’s always such a shock to be diagnosed with something so rare. However, research in this area is advancing, we are continuing to raise awareness, and changes are being made every day. We now know that there are ways to manage the disease effectively and still live a good life despite its unpredictability.
Having an open and honest conversation with someone who is going through similar issues and struggles can be so healing. There is no judgement or awkwardness. No one wants to talk about bladder issues, for example, but within the community this is so common that it doesn’t really matter. It’s so liberating and so good to know that you’re not alone. We share experiences and advice and look forward to our meetings face-to-face.
For me, this journey is all about getting to truly know myself and stand up for what I need and believe in. Self-confidence doesn’t come naturally to most people but a disease as rare as NMOSD teaches you to self-advocate and speak up. I have said this before, but you can only get help if you ask for it; doctors can only help you, if you give them the information.
So, my advice to patients would be to not be afraid, to stay informed and to know that there is a life after the diagnosis. A good life!
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