Exclusive Content

But do you really understand?

By Betty Gibson
Okay, multiple sclerosis is your diagnosis, and a part of your life. You are doing everything you can to fight it, to continue to be happy and productive. You have a care partner (my husband refers to himself as an aggravator!) who understands your altered needs whether minor or major. Is this really true? Do people really understand?

Discussing MS with my friends, acquaintances, and sometimes total strangers (no, I have actually never met a stranger) has given me a different view of relationships in regards to understanding this condition we are experiencing.

“I feel like bugs are crawling on my body” a drug company ambassador said at a recent meeting. Wow! For years I have told my husband about the termites nibbling at me. Now he heard it from someone else!

Vindication seems to be what many MSers seek. No, we aren’t crazy (well, I have my moments!) but are so relieved when someone else discloses they share the same interesting results from their MS.

Fatigue — we hear about the special fatigue that is a major complication for many MSers. People fall asleep with their noses resting in their dinner, or as they read a bedtime story to their children. No comment about other bedtime activities that may be affected!

One woman at a meeting recently confided that her husband of more than 20 years still doesn’t really get it. When she says she is really MS fatigued, he suggests exercise, washing her face with cold water and similar activities to “wake her up from her drowsiness.” He is sweet, has a super sense of humor, but in this case just doesn’t get it.

Recently I conducted very unscientific research into what MSers want people to understand. So many people offered their thoughts and wishes! The most touching was this:

“L” wrote “I am still trying figure all this out, but I want to be treated like the intelligent and independent young lady that I have grown into over the years. I am learning that I sometimes need help and must be willing to accept it. I need help, but not pity.”

Understanding meets all the challenges we face in our interactions with others. We do need help at times. We do not want pity. We are different, but we are still the same as everyone else. Isn’t this true of everyone?

These are some of the comments MSers made when asked to name the one thing that others just don’t understand.

“A” “They don’t understand the “forgetfulness.” People see I don’t walk, but they don’t’ understand why I don’t remember things.”

“D” People ignore you and talk with your caregiver as if your mind doesn’t work.

“S” People ‘don’t wait long enough (for you) to get the phone or open the door after (the) bell is rung once.”

“M” Why I find it hard to “Get organized to clean up the house. I am organizationally disabled.”

“N” “It can be hot with no humidity and I am fine. Once the humidity goes up, I internally melt like ‘Frosty the Snowman’ and people cannot see it.”

“G” Have difficulty remembering things.  My husband becomes angry and thinks I am getting Alzheimer’s.

One major surprise? Fatigue was only mentioned by one person! Yes, that is a major problem with many persons with MS, but apparently other factors need understanding by the outsiders who coexist with us.

Many of us, or perhaps all of us, have wished “outsiders” could experience what we do for just one day. That 24 hours would make such a difference in the lives of all with MS. Until that becomes possible, or better still a cure is found (!) we must calmly share our feelings, try to be understood, and patiently tolerate what can’t be changed.

We have MS, but we are strong!