“Oh, I am sorry.”
How often do you hear that? I am not referring to a normal everyday apology. No, I am talking about when someone hears, for the first time, that you have multiple sclerosis, or other serious illness or disability.
Now, don’t get me wrong, I am not criticizing the other person’s response. It seems to me to be as automatic as answering “I am fine thanks,” even when you aren’t. It’s just the way we are.
What they are really trying to say is that they are sorry to hear we have MS.
However, the “I am sorry” reply made me think about people’s attitude to, and what they understand about, multiple sclerosis. Indeed, if I think back, I must admit that I knew nothing about MS when the neurologist made his diagnosis 15½ years ago. Everything I now know about the disease, I have learned since then – much of it from experience of myself and others.
Trying to explain MS, what we go through, and the fact that we all experience it differently, is not easy. So, if we who have it find it difficult to put into words what we go through, just imagine how hard it must be for someone else to understand.
Understand the challenges we face
Think of the various challenges that we may have to deal with as part of MS. There is anxiety, bladder problems, depression, fatigue, foot drop, hearing loss, and heat sensitivity, memory loss or brain fog, muscle spasms, and muscle weakness.
Then there is memory loss or brain fog, muscle spasms, muscle weakness, numbness and tingling, pain, sexual dysfunction, and vision problems.
Of course, we don’t individually experience all of these.
Also, to the uninitiated, MS is MS. They tend not to know about the relapsing, primary progressive and secondary progressive types of the disease. Furthermore, even if they have heard of the names, they are unlikely to know what they mean. And that offers us another opportunity, and that’s an opportunity for us to head down another avenue of explanation.
Some of you may tire of answering questions about how you are affected by, and how you deal with, the problems thrown up by our unwanted companion. That I can understand, but I will continue to do my best, as someone with MS and as a journalist, to answer questions that anyone may have.
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.HH