My whole life changed on the day in 2005 when I was diagnosed with multiple sclerosis. It felt like I was in a horror movie. From one moment to the next, I went from being a person to being a person with MS.
I had no idea how to deal with it. I was confused, irritated and sad. Something was happening that was beyond my control and I didn’t know how to cope with the situation or the disease. I didn’t understand what was going on. The only thing I knew was that there was suddenly this massive shift – and not just in my life, but in my husband’s life too.
Not just my life
My husband was lost in the sudden chaos that had taken over our lives, and I know he understood even less than me. Yet, he was my strength at this time. Instinctively and unconsciously he stepped into support mode. He structured my day, gave me challenges and kept me busy.
When I think about it today, I have to smile.
Before I knew it, he was asking me to manage the household, to prepare lunches, and to make sure our lives were running in the smooth, efficient way it always had. This structure helped me to surface from my sadness and helped me find my way back to the life we call ‘normal’ today.
I won’t lie, sometimes I was annoyed by him and his orders. But it worked. Today I know how important it was to have somebody standing behind me, giving me the strength to survive and to move on in order to find my way and start my life new.
Today I don’t need somebody to keep me busy since I have developed my own coping mechanisms. Since my diagnosis, I have founded my own business, started a blog and am leading an almost normal life. I have learned to live with my MS and can manage and organise myself – most of the time.
The moments when you need someone
I still have MS, but I also still have my secret superpower – my husband. He is still here. He still takes care of me and is always my backup – if I need one. And sometimes I do. Although I am a very strong and resilient person, sometimes there are these moments...
Every person who lives with a chronic condition
s knows about these moments. It’s when you are not feeling strong or positive. It’s when your resilience wears thin and your coping mechanisms don’t quite cut it. When this happens, we need a place to come back to where we can find balance and rest. This place is with the people behind the scenes who support us. The people who provide assistance and calm.
I am convinced that everybody living with a chronic disease needs the support of the people behind the scenes who knows them very well.
The partners, friends, family and others who understand without words what is needed. They are there, but mostly not visible and usually not paid. They don’t ask, they just act and sometimes they are our voice when we need it.
It is good to know that they are there.
UK/MED/19/0277 September 2018