I know first-hand the frustration that comes when people do not realize the daily struggles we all experience in living with multiple sclerosis.
If they did I wouldn’t have to endure disapproving looks when I park in a disabled car space. Or explain why I struggle in crowded places; opt to sit in front of the air conditioner and not bask in the Australian sun; why shopping online is a necessity; wearing runners with jeans isn’t a fashion statement; and as I tell my partner why holding hands makes walking much easier.
However when I think of the many times I am misunderstood, I can honestly say I don’t mind the invisibleness of MS. I don’t mind if people do not entirely comprehend or appreciate my struggles.
MS has been an incredible eye-opener. Part of living with relapsing-remitting MS, is having to constantly move between two worlds. When in the remitting phase, no one would have known I had a disease. Yet it might only be two weeks later that I had a relapse and struggled to walk, and interactions were then based on a disability. I was the one who was invisible, not my disease.
Even when in the hospital, I felt like a disease. Interactions were based on what I had, not who I was.
To survive the hospital experience I had to constantly remind myself that MS was only a part of my story. It didn’t define who I was.
Fortunately today I’m back in the invisible phase. At least when I’m sitting down, as my walking style is a little questionable! But it is not immediately apparent why and I don’t ever feel compelled to let everyone know.
On reflection that is why I embraced traveling and living abroad. Multiple sclerosis was no longer my identity. The first question people asked is “Where are you from?” not “What do you have?”
The invisibleness of MS at times enables me to forget about this disease. This is not denial. There is no denying the impact it has on my life. But the emotional distance enables me not to constantly focus on my condition. It creates a freedom of mind, body and spirit. And I like that.
Are you happy that MS is an invisible disease or are there times you wish others could see what you are going through?
Teisha lives in Australia, and was diagnosed with MS in 1997, aged 22. Teisha’s book Life Interrupted shares her story and the insights she has gained on her journey from hurdle to hope. In writing articles for Modern Day MS Teisha wants to impart confidence that moving beyond the darkness of MS is possible.