I’m a disabled veteran, but sometimes it’s hard to explain
I often feel the need to 'justify' my MS disability
I have not been kind to my body over the years. I was very active in my old life, although I was a little clumsy even before multiple sclerosis (MS) started affecting my balance. Active and clumsy aren’t a great combination.
I accumulated plenty of bumps and bruises along the way, along with lots of injuries that required stitches and staples. You’d think a cast or two might be mentioned, but the only bone I ever broke was in my nose.
The downside to having good bone density while being accident-prone is apparently having lots of joint injuries. I’ve dislocated both shoulders and had multiple knee and ankle twists and sprains, resulting in three surgeries. As a result, I’ve resigned myself to daily anti-inflammatory medication, using braces as needed, and being able to feel a storm coming.
‘Disabled Veteran’
Despite the aches and pains, I’m sometimes grateful for my injuries because I feel a strange need to justify my disability due to MS.
I have a wheelchair-accessible van with a license plate that says “Disabled Veteran.” While both of these words are true, when people see it and thank me for my service, I often find myself explaining that I wasn’t wounded in combat, but rather disabled by MS. I’ll occasionally even catch myself listing my other injuries, as if I’m trying to prove that I deserve the label.
I’m not ashamed to have multiple sclerosis, and sometimes it’s even invisible to me, too. I’ve written before about how MS can be confusing to others because it doesn’t fit with my prior life. In the military, people get hurt by doing hard things, not because of a chronic illness. Maybe I’m still trapped by that warped logic. Perhaps it’s why I feel the need to have “real” (visible) injuries to “earn” my disability.
As an article in Psychology Today pointed out, people feel a need to justify just about everything, including simple things like being hungry. Of course, we also try to justify our resentment. I certainly resent having MS and its various symptoms, and maybe that’s why I’m compelled to justify it.
Another part of it is that I probably don’t understand it completely, which makes it seem less real to me somehow. Perhaps that’s why I describe injuries that people can relate to when I feel the need to justify my condition.
Does anyone else feel this way? Please share in the comments below or join the discussion at our MS News Today Forums.
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About the Author
Lisa Kandel
I do feel like I have to justify how I'm feeling all the time. Because no one can see MS. Even though we may look okay on the outside, the inside feels nothing but. My friends and family ask how I'm feeling and I tell them I'm not feeling well. But sometimes the way they look at me, I feel like they don't believe me. I think it's hard for people to understand because they can't see the disability. I can only try to explain how I feel.
Benjamin Hofmeister
Thanks for the comment Lisa!
I've never been able to explain the invisible despite my best efforts. That's probably why we just say, "I'm fine".
Tom A
Only a very few people are ready to hear enough detail to allow for some accurate or worthwhile understanding, in my opinion. It’s fine to boil it down to something they can relate to, I suppose. But those that know you have MS and see you regularly over many years, will form an opinion on how it affects you. But delving into the detail of what it’s like and how it changed your life, is way beyond where most people want to go. Some figure it out for themselves. “Live” support groups were good for me in the beginning. Do they still have them or is everything online these days? Finally Ben, I’m sorry for this, but at this point, I don’t feel a need to justify myself unless someone asks. My aunt blamed me for my mother’s passing because I didn’t keep MS a secret. I sued a former employer after disclosing and they made something up and fired me. If someone doesn’t like I have MS, they can kiss my you know what. But I’ll be as gracious as possible to everyone else.
Benjamin Hofmeister
I wonder how much of my justification is for myself? Probably more than I'd like to admit.
Elizabeth Williams
I hear, Ben. I was a ballet dancer, and was sidelined for part of a season with a knee injury. So years later, I ran into somebody from my old company. He looked sympathetically at my cane, and said, "Oh, is that the same knee thing? I didn't realize it was that bad." And damn it, I almost let him go on thinking that, because I SO hate having to say I have MS.
Benjamin Hofmeister
Thanks Elizabeth! I hate having to say MS because invariably they say that they know of someone with it that is climbing mountains,etc and I don't want to get into all the ways that person isn't me.
Charles Dick
I can relate to that. I do not have disability benefits because I could walk into the courtroom where my status was determined. Add to that a doctor they had on conference call who said that to his knowledge MS does not cause the kinds of problems I have, invisible symptoms that a person just can't see, and I was determined to not be disabled. The doctor was not even a neurologist. The system is messed up.
Benjamin Hofmeister
Thanks for the comment Charles. That is messed up and unfortunately, all too common. In the disability process it is definitely not innocent until proven guilty. It's able until proven disabled and then prove just how disabled you really are.
Giovanni
Yes I’m the same in justifying MS. However I get upset and angry when people don’t know about MS
Benjamin Hofmeister
Thanks Giovanni! I've found that most people know the name from drug commercials, but have no idea what MS actually is.