Revealing real lives, real stories
When my neurologist told me I had relapsing MS, there was no sense of empathy, no discussion about my options for support, no explanation about what MS is or how I could expect it to affect me over time. As the news sunk in, it was like I had lost the ground under my feet, and I was in a deep, dark hole.
I was referred to an MS Center where I was lucky to meet a wonderful neurologist. She took the time to explain the diagnosis to me and recommended that I stay in the center while I recovered from some of the symptoms I was still experiencing. We discussed different options before deciding on one treatment, and I’ve trusted her to be my doctor ever since.
Now that I am managing my MS, I have become a Triathlon Coach and have started working with children; I want to show them that MS doesn’t define me.
As a carer for someone with MS, it is easy to feel insignificant, but I truly believe we are the unsung heroes. Despite everything seemingly falling apart around us at times, we must keep things going.
When my partner was first diagnosed with MS, she seemed happy with the diagnosis as we finally knew what was wrong with her. I was worried about the future, but she assured me that her case would be manageable. But we soon found out that MS can progress and that relapses can hit hard, often unexpectedly.
Since beginning to care for my partner I now do my best to seize every second of every day that we have as a family. I seize the day because I’m happy we’re together and alive, and I want to be prepared for whatever the future will bring.
Alexander’s story - Employee of Merck KGaA, Darmstadt, Germany
I was diagnosed with multiple sclerosis ten years ago at the age of 26, while working for Merck KGaA, Darmstadt, Germany. Gradually, I have come to terms with my diagnosis and learned to adapt my life as needed. Living with MS is like having a permanent dinner guest – it’s something I am always aware of. However, I take charge of it, so it doesn’t restrict me.
It has given me the ability to appreciate the simple things in life that I may have taken for granted before, such as seeing the sun in the morning.
Although I may use a wheelchair to ‘roll’ to work in the mornings, I have a job where I am treated the same as my work colleagues and having MS doesn’t impact my ability or my role.
When I first started to lose the feeling in my left foot, I thought that maybe it was just some passing thing. But over the next week, the numbness spread up my left leg, and my left hand, and my left arm. I could not feel the left side of my body, which worried me.
Like everybody else, I have had my moments of doubt, worry and negativity, but I value my life more now than if I did not have MS. Being diagnosed with MS at the age of 20 years old has made me an even more positive person.
I do not want anyone to pity me because I have MS. I want them to be proud of me because I am positive, because I say, “I can.” Despite living with MS, I finished my studies at University and followed my dream to become an Engineer.
At the time I was diagnosed with MS, there was no one I could talk to who would understand what I was going through. This encouraged me to help set up a support and counselling center for people with MS in my hometown in Romania.
A lot of people my age who have been diagnosed with MS are in denial about it. However, if you ignore your problem, it does not go away, it just silently grows until you cannot ignore it anymore.
MS can come in many shapes, forms and sizes. We are all people with lives beyond MS. We have jobs, friends, families, and hopes for the future.
When I received my diagnosis of relapsing MS, I felt angry and distressed and not sure about my future or what this would mean.
I became blind in one eye, walking with a walking stick and I had lost the ability to write with my right hand. I wanted to teach German for the government but wasn’t allowed to because I have MS. I seriously hope that my experience can inspire other employers to hire more people with a chronic condition.
Even though I was diagnosed with MS, I was determined to have another baby. After working closely with my doctor, I recently had my daughter and, just as when I had my son, I have a social and family network to help me when I need it.