Today, May 30, is World MS Day and people living with MS and the organisations which support us, use this as a day of making people aware of the illness. There are so many fantastic events taking place. Here in Ireland the MS Society is seeking sponsors of its balloon race. There will be 9,000 virtual balloons released, each one symbolising a person living with this illness in Ireland.
Over the last week I was delighted to see Flirt FM (the radio station for students in my local university) had a two hours special for the day and there is a new podcast being released sharing the experiences of people like me. So much wonderful information. Each one of these connects my community with the world. For so long, people living with disabilities or chronic illnesses were hidden away, now we are pushing to be seen as part of the world. There is a long way to go until all the obstacles are overcome, but it is certainly better than it was when I was diagnosed.
What does “Connections” mean to me?
Over the last year the world has come to realise the implications of illness. COVID-19 has been harsh, people losing loved ones, financial hardship and the mental strain of living isolated. So much of this is the reality of illness, and is something of which I had become accustomed. The world reacted to this and started to develop ways of connecting which did not involve physically moving from one place to another. We could connect to the world from our couches.
Just prior to the pandemic I started to train with EUPATI to be a patient expert (I started in November 2019) and now I am qualified, an EUPATI Fellow. As part of this training I was introduced to patients from all over the world, with a wide variety of illnesses. Each one had a different story, but contained within each of these, were many similarities. These connected us. I am no longer only part of the MS community, but a far move varied, but united troop of people doing everything they can to improve the quality of life of people living with illness.
What does this give me?
It gives me strength. Very simple. Now I know I can represent not just MS, but all patients. I have also discovered, through this network, fantastic speakers, motivators and bravery. It takes courage to tell the world you are ill. For so long, society did not want to accept people who have chronic diseases, as, I suspect, it highlighted the fragility of the human condition. We want to appear strong, healthy and virile. Sickness is not represented by these traits.
However, I now see tremendous strength in these individuals, and a passion to improve the lives of others. These are talents which must be applauded. The world needs to know. Just because we are weak in one aspect of life, does not mean we don’t have the power to overcome incredible obstacles. People like us, forced to find treatments for their disease. To achieve this they have lobbied governments, corporations and academic institutions, pushing to get something done, against incredible obstacles.
This gives me the courage to step in front of the lights and to speak about my experience of illness.
What next?
I believe my community can connect with the wider world. Starting locally, small, sharing what we have learned. These skills can be used in every field. Imagine how resilient young people could feel, if we can teach them all we have learned battling against obstacles which many healthy people would run away from. They can, because there is possible another route they can take to achieve success. We do not have this luxury, and so we learn how to be victorious, because we have no choice. Could this be taught? Would society see us then as an asset, something to be nourished, and applauded?
This is my hope. Society can grow and become more than it is. By people like me doing our best to create connections across the divide of health. A bridge to be travelled freely over the chasm of disease.
