Most of the time I devote to YOU not me but this time I am being very selfish and if you do not want to know more about me then stop right now and leave today. I have always wanted to educate more about the MonSter that I live with but seldom say anything here for I do not want pity. However this is Multiple Sclerosis Awareness Month and I am going to do my part and it will be done right here.

Many days this month you will find some information here about MS but I promise not to bore you with it and will try to make it just a little informative. Today, I am talking about me and how I feel because I have this but you look so good disease.

“My neurologist, my family doctor, even my aunt’s visiting nurse—they all say ‘but you look so good for someone who has MS.’
“My family seems to assume that if they can’t see it, there really isn’t anything wrong with me.
“They should see my MRIs for the past 10 years. Should we all start carrying wallet-size copies of our MRIs? This is my niece … on lineis is my son … and this is my MS.”
— Carolyn Doss, online chat group participant

People who have “invisible” MS symptoms have a unique set of problems. Some people assume that you don’t really have a disease. This can undermine your confidence and your relationships, and discourage you from seeking treatment or help for problems. Add in living with all the other things that other people can’t see—your feelings of anger, uncertainty, frustration, and fear! Still, people will look right at you and say, “You look so good!”

Common “invisible” MS symptoms

MS symptoms that are hard to see include fatigue, pain, cognitive problems like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, and bladder or bowel problems. Yes I have each if these and more.

Everyone experiences fatigue, but people with MS are hit hard by a kind of fatigue that can be overwhelming. This can be hard to explain to outsiders. People with MS often expend extra effort on activities—such as lifting legs to walk—which once were second nature. These efforts add to the burden of MS fatigue.

“It can be frustrating when you tell someone you’re tired and they say they know the feeling, they had a big night last night, to.”— A member of a “But You Look So Good” self-help group

“My wife wanted to meet me at a restaurant and I forgot and came home. She’s insisting I don’t love her anymore.”

— Person with MS, online chat group

While everyone is forgetful sometimes, people with MS may have memory lapses that signal cognitive impairment, one of the most disturbing hidden symptoms of MS. Neurologists in the MS community now recognize that cognitive impairment affects up to half of all people with MS. The problems are usually subtle and are termed “mild”, but they can have a major impact on a person’s life.

At some time, most people with MS experience bladder or bowel problems. The embarrassment can cause people to cut off their social, sexual, and public activities. These problems, if untreated, can also develop into serious medical problems. New medications and changes in diet and behavior can do a lot to keep these symptoms invisible—and under control. Talk to your nurse or doctor.

I think the most difficult thing to cope with is the absolute dichotomy between how you look and how you feel.”

— Anne C. Huss, Atlanta, GA

A diagnosis of MS changes the way you think about yourself. People with invisible symptoms must constantly adjust to the differences between how they feel “inside” and how the world reacts to them when they “look so good.” Family members, friends, employers, even doctors may doubt the validity of invisible symptoms. When people question you often enough, you may begin to doubt your own perceptions. MS is different for every person, and it’s important to learn to recognize what your MS is like. Some people keep a journal or diary of symptoms. An understanding confidante, mental-health counselor, or a self-help group help many people keep their self-esteem intact.

All in the family

When one member of a family has MS, everyone in the family is affected. This is true whether the MS is visible or invisible.

Dr. Deborah M. Miller at the Mellen MS Center at the Cleveland Clinic, told this story to illustrate how hidden symptoms can create a conspiracy of silence within a family, despite everyone’s best intentions:

“Anna has problems with weakness and balance, and she is concerned about managing a set of steps going into someone’s house. Instead of admitting the fears, she just says she doesn’t want to visit. It’s a shorter explanation. The family gets frustrated because they see her giving up on life. The fact is, Anna is just concerned about one specific part of the outing. But nobody in the family says anything more about it. Soon everyone in the family chalks up the episode to laziness because, strangely, that’s easier than admitting that Anna, their wonderful mom, sister, or wife has this unpredictable disease.

“The consequence of everyone’s silence builds,” Dr. Miller continued. “The family knows Anna has MS, and becomes watchful and overly protective. They think she is lazy, ‘giving in’ to MS, and, at the same time, they stop her from doing things for herself.”

Once the silence is broken, family members can work together to modify activities and responsibilities. Everyone in the family needs to learn about MS. The Society offers programs and literature for everyone. With education, family members won’t question whether or not invisible MS symptoms are real.

A supportive family won’t allow the person with MS to withdraw and give up, but won’t push in situations where pain, fatigue, or other problems are overwhelming.

The doctor/patient relationship

Sometimes, even doctors don’t seem to take invisible symptoms seriously. Neuropsychologist Dr. Jill Fischer often sees newly diagnosed people whose symptoms have not been accurately assessed and treated. The person’s fatigue, memory lapses, dizziness, or other tough-to-pin-down complaints have been ascribed to a strong emotional reaction to the diagnosis. They have not been seen as MS symptoms that might be helped with medication or rehabilitation.

Dr. Fischer believes people often need coaching in how to describe symptoms to their physicians. Learning how to describe clearly what’s happening and how it makes one feel is vital to creating a working partnership with one’s doctor.

Many times I have a very difficult discussing what is going on in my life for I am one of those but you look so good but I feel so bad and live with this MonSter every day. I am fortunate that the physician who treats me has a sister who lives with this disease so she is not just a neurologist and a MS physician but a physician who has a family member with the disease.

Now you know why these lyrics are from my favorite song……

I Am Woman

-Artist: Helen Reddy from “Helen Reddy’s Greatest Hits
-Words and Music by Helen Reddy and Ray Burton

I am woman, hear me roar
In numbers too big to ignore
And I know too much to go back an’ pretend
‘Cause I’ve heard it all before
And I’ve been down there on the floor
No one’s ever gonna keep me down again

Oh yes, I am wise
But it’s wisdom born of pain
Yes, I’ve paid the price
But look how much I gained
If I have to
I can do anything
I am strong (strong)
I am invincible (invincible)
I am woman

You can bend but never break me
‘Cause it only serves to make me
More determined to achieve my final goal
And I come back even stronger
Not a novice any longer
‘Cause you’ve deepened the conviction in my soul

Oh, yes, I am wise
But it’s wisdom born of pain
Yes, I’ve paid the price
But look how much I gained
If I have to
I can face anything
I am strong (strong)
I am invincible (invincible)
I am woman

I am woman watch me grow
See me standing toe to toe
As I spread my lovin’ arms across the land
But I’m still an embryo
With a long, long way to go
Until I make my brother understand

Oh, yes, I am wise
But it’s wisdom born of pain
Yes, I’ve paid the price
But look how much I gained
If I have to
I can face anything
I am strong (strong)
I am invincible (invincible)
I am woman

Oh, I am woman
I am invincible
I am strong

I am woman
I am invincible
I am strong
I am woman

Yes this is my song…..those words are me, I am strong I have been down, I have been on the floor many times from falls and got back up. I am strong and I am a woman. I am a better person and all of this is because I have Multiple Sclerosis. I am a better person because of this disease than I was before and in many ways I can say I am thankful yes I call it the MonSter but it has taught me so much and given me so much for which I am thankful. Life Is Simply Good when I come out of my basement.