It is my illness.
I can manage it on my own.
Don’t interfere with my life, you don’t know what it is like.
These thoughts have spun around my head so many times in the last 25 years, I have lost count. It can be lonely when the people around you don’t understand what you are going through. But it doesn’t have to be like that. If you gather around you a group, or team, of people that can help and support you, then the course of your illness will pass much more smoothly.
Before I got support
When I was first diagnosed with Multiple Sclerosis I was in London. I had just started my first job after leaving university. I was only 5 months working and I got the news that these strange symptoms that I was feeling were an incurable illness. The specialist told me that I should just continue living my life. No changes were necessary. The problem was, I was scared. When I looked up MS in the encyclopaedia (the days before the Internet) it said it ‘was usually progressive causing … paralysis’. As a young 23-year old this was not how I had seen my life progressing.
So what happened next, and after nearly a year of things getting worse, I returned to Ireland. I joined the MS Society and met other people with MS. My family gathered around me and gave me much needed support. Books about MS flooded in from around the world. A new neurologist took a look at my condition and gave me reassurance. Since then I have continued to build, and re-build, the team around me, so that I didn’t feel like I was doing this as a solo effort. I have continued like this since then. 2 days ago I met an old friend on the street and he asked how I was getting on (he noticed I was using a stick now). I told him honestly, and briefly, how things were. He said that he might know someone that could help me in my search for a particular expert.
Sharing leads to support
By sharing my situation with other people I have been able to learn much more about how to treat my illness, and I also have the feeling that people support me. Nobody can know everything. Running solo means that you have to learn things that other people have already learned. What a waste of time and effort. I have found in my life that people want to help. By asking for help I have had the support of many people. This is true no matter what your problems are. Asking for support is a sign of strength and not weakness. After all, you would like the opportunity to help someone, if you could. They could be emotional, financial, or anything else. We like to help each other, and together we are stronger and more resilient.
Strength in numbers
This is one of the most amazing things about the human species. We share, we support, and we make each other stronger. I have seen many people try to struggle through on their own. In my life, I have found that when I share with other people, usually I get help. Help that is positive, and well-meaning.
Having a chronic illness means that your life is generally uncertain. You do not know what the future will bring. I am facing the possible reality of my mobility reducing even more. To combat this unknown I am now speaking to people about what I should be doing now, to prepare. I am getting positive, and constructive support, and I know that I will not be facing this alone. That is a huge comfort.
Have you felt alone? Did you look for support? Let me know your experience.
My other tips for living with a chronic illness