Finding the Words

The week my daughter turned 3 in May 2014, I was admitted to the hospital with extreme pain and loss of vision in my right eye (optic neuritis). After a battery of tests (including MRI and lumbar puncture) I was given a diagnosis of MS. My husband was instantly relieved that it wasn’t a brain tumor causing my symptoms, while I was panic stricken. What does that mean? What about my daughter? Will she get it too? Will I still be able to take care of her? How is this going to change me? We spent the next 5 days in the hospital learning everything we could about the disease. By the time I was sent home, I was so overloaded with information that I think my brain just shut down. I just needed things to go back to normal and, of course, that didn’t happen.

I’ve spent the past year, trying to cope with my diagnosis. I was so lucky to have received a diagnosis so quickly and have not had any other relapses in that time. My husband reminds me of my “good fortune” all the time. “It could have been so much worse” he tells me and I know he’s right…BUT…my body no longer feels like my own and I don’t know how to talk about it.
Every tingle, pain or strange sensation brings worry and fear. How long will this last? Is this what a relapse feels like? Should I tell someone?

My husband is a problem solver. When I tell him about my pain or if the fatigue becomes too overwhelming he starts looking for what’s causing it. Am I dehydrated? Have I been taking my meds and vitamins? Am I stressed about anything?

When I tell him that I couldn’t concentrate at work that day or I had to walk away from a conversation because my brain wouldn’t give me the words I needed he tries to soothe me by saying that it happens to everyone.

Most days I take comfort in his support. I don’t know how I would have made it through without him. However, there are those days when I just want to scream, “I HAVE MULTIPLE SCLEROSIS!!!!” There’s no fixing it today. I can’t help it when the day to day chaos of being a wife and mother sends me into sensory overload. My body is not going to cooperate today.

Finding the words to even explain what I’m feeling is a bigger challenge than I ever thought it could be. I’ve always prided myself and have received praise for how well spoken I am and I feel like this disease is taking that away from me. Even as I’m writing this, I feel disappointment in my inability to accurately convey my thoughts. I’m afraid of what people will think. I’m worried that this will be all I ever talk about. I’m scared that it will seem like I’m complaining all the time.

I’ve read wonderfully poignant and uplifting stories about people living well and coping with their MS. I want to be one of those people. I don’t want this disease to define me but it is a part of me now. So how do I make room for it without sacrificing something else? How do I ask for what I need and not feel like an inconvenience?

My life is full of questions so now I need to find the right words to ask so I can get the answers.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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