Statistically, if you are reading this you are most likely a female. It is reported that women are three times more likely to be diagnosed with multiple sclerosis (MS)1. While I sit here writing about the different ways that MS impacts me as a woman, I want to recognize from the beginning that I do indeed know and understand how men are affected as well. I’m in no way suggesting that as women we have it harder. MS affects each of us, male or female, in a very unique way.
That said, after writing Hair We Go and being asked to be in my best friend’s wedding, I started to think about how MS can affect women differently. I’m growing, I’m aging and with all the unique humps we must overcome, or circumvent, I’m starting to learn that MS does indeed complicate that. It’s hard for me to know the difference between “life” and growing older, versus the complications of my disease and the changes in symptoms which happen as the disease progresses over time. Sometimes that line is blurred.
What I do know is that MS affects every area of my life, whether that’s motherhood, aging, social, beauty, spiritual or love.
Life’s little logistics
So, what parts of our womanhood are directly affected by the disease in ways that most people don’t understand, unless they are told? My best friend’s wedding brings that question to the forefront for me. I was so happy and honored to be called on to be a part of her wedding, but there was one “silly” little issue. Two, actually: shoes and walking.
All the bridesmaids agreed on these super sexy burgundy heels. If I have learned anything about myself from living with MS, it is that it’s typically my greatest wish to not draw attention to my condition. I didn’t want my best friend to stress. I didn’t want my MS stealing her thunder. But, I had to tell her “I can’t wear those awesome heels you picked out.” My beautiful friend responded, “I know, that’s why I picked these out!” and she texted me a picture of these beautiful ballet slippers that she picked out especially for me. I was super touched. I must say, the beautiful thing about being a woman and aging is that my friends have aged with me. And while this friend was not suffering from MS, she was battling a chronic disease as well, so long before she asked me to be in the wedding, she considered my needs. That’s why I always say, “Everybody may not have MS, but everyone has something”. Communicate your needs to friends and they will understand.
Weddings, shoes, ambulating
But my logistical issues didn’t end there. How would I walk down the aisle with a cane? Again, I really don’t want to be stared at or set apart because of my disease. But my friend knows I can walk by myself if I am holding on to someone’s arm and she paired me up with a gentle giant of a man who held my arm and steadied my walking and my nerves.
A wedding is just one example of cultural norms where women are expected to show up and be a part of the festivities in a certain way. It sounds silly, but when you can’t be a part of it, in the ways that others are, it’s sad. MS affects everything, on every level. A simple wedding isn’t so simple. However, there are adaptations that can be made to help us be part of the festivities. AND, I didn’t stand out. I may have stood out for blubbering and crying happy tears – but that’s always been me. That’s a side of me I am happy to show.
Hair we grow?
A friend of mine from the online MS community told me she hadn’t shaved in years because she couldn’t lift her arms. In an act of solidarity, I stopped shaving mine for months because I wanted to understand how that affects a woman. I’m vain. I’ve never not shaved my body every day. Choosing not to shave under your underarms is a very intimate thing, that typically makes a public statement. My friends who did not shave were trying to make good points about body hair on women. Why are we made to shave and look like pre-pubescent children? It’s a stance I understand, but never wanted to make necessarily. For my friend, she did not choose to make that statement. But because she couldn’t shave, she was almost forced to align with those women. She just wanted to shave but couldn’t.
I was watching a video by Selma Blair, who was recently diagnosed with MS, and she was joking about how rigid her hands are. The problem with that is, it makes it almost impossible to put her makeup on. So, she did a makeup tutorial showing what happens when she has to do her makeup alone. She looked like a clown, and she laughed as her disobedient hands just blotted foundation all over her face. They refused to cooperate on this day. Many of us can relate. It was lovely. Her attention to the simple struggle as a woman was kind. I don’t know about you, but I rarely leave the house without makeup. Leaving without makeup because I couldn’t do it on my own absolutely affects me and my femininity. Not all of us choose to express our feminine side in this way – but I do. And for me, it’s really sad when I can’t control that. Did I mention I’m aging? If ever I needed makeup, it is now in my 40’s! Kudos to the MS warriors who endure that and don’t let it bring them down.
Motherhood and sex
Motherhood is another big area where MS seems to affect me in a very intimate way. They say symptoms of MS disappear during pregnancy, but unfortunately my pregnancy required visits to the hospital weeks at a time. To add to this, once you deliver your baby, your MS hits hard. I found it so tough being hit with the brick wall of fatigue and balance issues etc when trying to care for a newborn. I wanted desperately to do everything – and I simply couldn’t. Even getting the baby from the crib and walking him downstairs was dangerous. My legs would overshoot. Stairs were scary, especially with a baby in my arms.
Sex as well. Losing feeling in the area that is made to feel amazing during sex is another thing that is unique to women. Keeping it real between the sheets requires some work.
Journeying through life as a woman with MS
When you are woman, MS has a certain slant in how it affects you personally. Your gender is part of your person. Only you know how deeply your MS has affected your womanhood, your femininity. I know how MS has compromised my life as a mother, sister, wife, teacher and friend. Every person with MS goes on a life journey where we come to understand that. But, we also know how we have redefined our lives, old norms etc. I’m a creative, compassionate, giving person. I have had to fast-forward certain areas of life that I was looking forward to and jump into the body of a much older woman. With that comes great wisdom and strength. It’s made me a better woman than I could’ve ever dreamed of being.
Do you agree? How has your MS affected your life as a woman? Remember we are not meant to compare in so much as we were meant to connect. I pray wherever you are in life, with disease, you are redefining what it means to live with a chronic illness in a kick-ass way.