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Sunday, November 9, 2014

The New MS Revolution: Emotional Honesty

Sometimes I spend hours pondering what to write for my next blog. I peruse the online sites, the latest news topics related to MS, and the postings of other MS patients I know. I try to find inspiration from these things, and I always try to hit on something different. Most topics have been "done before," and other topics have been overdone. Some titles I won't even open because the title seems so tired and boring.

I must say, I spent the weekend searching for inspiration, but it eluded me. After a few days of searching, I became struck by something I had not noticed previously. Well, maybe I had noticed, but I never really stopped to appreciate it.

MS patients are undergoing a revolutionary change in the way we cope with this illness. In the past, this disease was shameful and embarrassing to discuss. The social expectation was that you kept your "dirty laundry" to yourself, and you certainly didn't discuss your problems publicly.



Going back to the 1950s when my grandmother had MS, we can clearly see that women in particular were expected to always look and behave in a perfect, feminine way. Women were told to dress a certain way, always act like a "lady," and certainly never complain about your children, your husband, your home, or any family issues.


My grandparents, 1940s

When family members became ill, it was not discussed. When teenage girls got pregnant out of wedlock, they were sent to homes for unwed mothers, birthed babies in secret areas of local hospitals, and were then ushered back home to act as if nothing ever happened. MS was no different in those days, and it was something to hide, lie about, and be ashamed of.

When my grandmother experienced psychiatric symptoms mimicking depression before her MS diagnosis,  she was whisked away to a hospital for weeks. At this time, she had many young children at home, but she was kept hospitalized for an extended period of time by her treating physicians. The children were made to interact with her only by writing letters. I can only imagine the pain this caused my grandparents and their children.

We hear these stories of archaic social attitudes in the 50s and 60s, but we seldom realize that MS was included in those social attitudes. When I stop to really contemplate this, I realize how fortunate we are to be MS patients in 2014. Look at the changes that have swept over society in the last 60 years. We have seen major changes in minority and women's rights, we have seen freedom and democracy spread worldwide. We are able to speak our minds online without fear of repercussion.  No longer do we sit in our homes with curtains drawn and doors closed, hiding our family secret.

Make no mistake, we are the generation of MS patients who are exacting real change on the MS community. We are the generation who are creating beautiful, emotional poems, blogs, and novels about our experience. We are openly sharing the cold, hard facts and the not-so-pretty details of our private experiences with this disease. When I read some of the incredibly gritty, gut-wrenching yet beautiful MS blogs I have found, I am brought to tears. Not only because I can relate so well, but I am touched by those who are willing to share their most intimate personal and emotional experiences in order to help others.


With the power of the internet and our amazing choices of MS related sites, we will never feel alone. We should never be made to feel that we need to hide away, in the dark, keeping our secret. We live in a time where honest emotional communication is the new revolution. I encourage you to be a part of that revolution, which is indeed as powerful as any major social change in history.

Never underestimate your power to help other MS patients. Simply by being honest and open, and sharing your life story you can be a healer. By being honest, we encourage others to be honest and communicate, as well. Topics online such as "honest parenting" are just amazing to read. People are getting real and no longer pretending that life is perfect. No one has a perfect life, and now we are reassured to see that others are making the same mistakes, having the same experiences, and going through the same issues as we are.

We have the power of the internet, a worldwide audience, to reach out to a new generation of patients being diagnosed every day. We should each stop to ask ourselves: "what can I do to share my experience? How can I help another newly diagnosed patient to feel less terrified?" It may be as simple as sharing your story.

Myself, my husband and our "bunch"!




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