Since My MS Diagnosis, I’ve Realized It’s OK to Be Different
Confusing people is my special skill. I’ll open my mouth, and no one will have a clue what I’m on about.
It all started with a diagnosis of multiple sclerosis eight years ago. Since then, I’ll often get, “MS? Oh my sister’s friend’s aunt’s nephew’s dog has that!” (Just kidding.) Yet so few actually understand what it’s like to live with an illness like MS.
Living with MS entails the unpredictability of my body doing strange things for no apparent reason, the uncertainty of disease progression, and the constant wonder about relapses and what they mean, why they happen, and whether meds are even working.
I love it when people ask me, “How are you doing?” I chuckle for a moment as I think of all the ways I could respond.
My favorite imaginary response would be to tell the truth: “Yeah, I’m not too bad today. I feel like water’s running down my back, ants are crawling over my skin, I’m tingling like crazy, my leg doesn’t seem to be working right now, and I can stroke my dog but weirdly can’t feel her fur. Other than that, I feel great, thanks!” I imagine their face would be worthy of a picture.
In reality, just to keep it easy, I respond with the classic, “I’m fine, thanks. How are you?” This means, “Let’s change the subject to something more understandable.”
Another thing that strangely seems to confuse people is my entrepreneurial household, which strongly believes in personal development, goal setting, and finding ways to help others. Many don’t understand that our goals and our need to help others in our business are so important they often come first over friends or family. We don’t have a TV in our house either even though TV is the “thing to do” around where I live. Deep meaningful conversation is often scarce. TV is the main focal point of conversations so if you’re not up to date, you get left behind. It’s another source of further confusion. Others may disagree with our way of living, but I’m OK with that.
A final point of confusion is a recent change I made to my diet. I’m following the OMS diet which is a plant-based diet encompassing whole grains, vegetables, fruit, and seafood. (However, I don’t like seafood!) For now, I’m using this diet rather than taking certain medications, particularly disease-modifying therapies, or DMTs. Therefore, eating out is difficult with anyone other than my husband due to the strict nature of the diet.
Yet recently, I was with family, and within 10 minutes I was offered a can of cola, a trip to a takeout restaurant, and a visit to an all-you-can-eat buffet. These suggestions were offered right after I had explained the healthy new diet I’m on!
Remember, I’m not saying that everyone should make diet a replacement for medication — that’s a personal choice. Taking DMTs alongside a healthy diet and listening to your doctor are positive things.
But where I’m at right now is that my neurologist recently told me that the medication I’d been taking for the last seven years wasn’t working. That means I suffered through seven years of horrible side effects that changed my life for no apparent reason. I feel like I’ve temporarily lost trust in medicine because of this, and I want to try more natural methods for a while.
Yes, my life is confusing for many others — I get it. However, I accept that I’m different and I take it in stride.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.