We’ve interviewed a few MS patients already about their experiences, which vary quite a bit already. Patients aren’t the only one who have to deal with the symptoms, doctor’s appointments and social oddities that come along with MS. Tricia’s husband Rich has MS, so we asked her for her observations of life with Rich, Charlie (their adorable kid!) and MS.
1) What’s been the hardest thing for you in dealing with Rich’s MS?
There are a lot of things that are challenges, and most days I don’t think of them, because I’ve been working with these challenges for so long.
One thing that is difficult are the sacrifices that I have to make for my family that many people take for granted, such as turning down a family function because the venue isn’t wheelchair accessible, or not being able to take a vacation, because of the uncertainty of the accessibility of areas. So much of the future cannot be planned, because you never know when he will have an exacerbation, and booking things that are nonrefundable can be risky.
2) How has Rich’s MS altered your life?
Before I met him, I had a vision of what my life would be like. I’m sure everyone does! But I’ve had to alter that dream quite a bit, giving up moving out of the city, buying a fixer-upper home, going to the beach as a family, taking vacations to Europe. I’m not upset that things didn’t work out the way I had envisioned, I’ve just had to create new goals.
3) Do you find that other people treat Rich differently? If so, how?
Absolutely. Rich speaks slowly and somewhat slurred, and people often assume he is unable to answer questions for himself. Quite frequently in stores or restraints, clerks will ask me what he wants. Or they will look at is both with confusion, as if they aren’t sure if he can order for himself. Sometimes if they start talking to him, and realize he speaks slowly, they will then change and start talking to me, because the assume he is mentally deficient. On our honeymoon in Canada, a hostess at a restaurant remarked to me that it was very sweet that I took my brother on vacation. I looked her dead in the eye and said “We’re newlyweds. This is our honeymoon.” She was very embarrassed, and she should be.
Just because a person is in a wheelchair doesn’t mean they can’t have the same relationships and experiences an able bodied person has.
4) Do other people treat you differently because of Rich’s MS? If so, how?
The thing I hear the most is “I don’t know how you do it,” and honestly, I just do it. Anyone would just do what they need to do to get through the day.
5) How hard is it for you to find support/similar people to get help from?
We are in a unique position because it seems to is that most other couples our age (late thirties) who have one partner with MS do not have the amount of accumulated disability that Rich does. When we’ve been to some “young adult” functions, I always felt like we scare people, because many people with MS at our age are newly diagnosed, and some may not be ready to face a potential future that Rich represents. Most of the MS spouses I meet are men supporting their wives. I think it is also hard being the wife of a disabled person, because you want to help your husband feel “manly” but it’s hard not to emasculate a person when your tying their shoes every day.
6) What would you like people who know nothing about MS to know?
People with MS have so very many varying symptoms from person to person, and sometimes from day to day. Some of those symptoms are visible, such as my husband’s inability to walk or use his hands without spasms, and some of them you cannot see or grasp quickly, like chronic pain, or balance issues. People with MS can appear drunk, but they aren’t.