Since my MS diagnosis in early 2010, I have become increasingly aware of the myths out there about life with Multiple Sclerosis – so frustrating! The list is long. At the end of this post, I include links to articles on the top MS myths, from writers over at CNN and ABC. Reading these articles inspired me to come up with my own Top 5 MS Myths, the ones that bother me the most.*
Myth 1: You will die from Multiple Sclerosis
Um, I don’t think so. This one really gets me mad, more so ever since I saw the cover of People magazine, highlighting Sharon Osborne’s reaction to her son’s MS diagnosis. Remember this? The headline read, “I won’t let my son die” and millions of Americans read about her fear that one dies from MS, as they waited in line to buy their groceries.
|Sharon, let's debunk this myth!|
Let’s set the record straight. According to the National MS Society, most people with MS have a normal or near-normal life. They claim that, “…only in rare cases, malignantly progressive MS can be terminal.” Our friends over at the MS Society in the UK echo this by telling us that, “People don’t die directly from MS, but if they are severely affected, the risk of dying from a complication related to MS (like an infection) is larger.”
Myth 2: MS is the same for everyone
It’s easy to quickly segment every MSer’s experience into one box of “this is what life is like with MS” but truth is, everyone’s Multiple Sclerosis is indeed different. Some of us have difficulty walking, some don’t. Some have a lot of numbness, some don’t. Some can ride a bike, some cannot. Some have mild paralysis, some don’t. Some MSers have many lesions on the brain, some have a few large ones along the spinal cord. Some have pain, some don’t. You get the idea. It’s different for everyone, kind of like a fingerprint.
|MSers are like fingerprints, no two are alike|
Myth 3: The MS drugs make you feel better
Man I wish this was true! The truth here is that the disease modifying drugs (or, DMDs) are designed to slow down the progression of MS, not necessarily relieve symptoms (although some claim that DMDs actually help with symptoms - this is awesome!). But not all is lost. There are options to consider that may relieve MS symptoms. Talking with your neurologist is an important first step because there are drugs available to help. For example, if fatigue is an issue, you might talk with your neuro about trying Nuvigil. Alternatively, many MSers adopt lifestyles of healthier eating, exercise and meditation to help relieve symptoms. Some even find occupational therapy useful. While this may not necessarily help with symptoms, there are certainly benefits to making MSers’ bodies stronger.
|Tysabri slows down the progression of my MS but does not relieve my symptoms|
Myth 4: MSers eventually require a wheelchair
This is a valid thing to worry about as some people with MS do live life with a wheelchair. It is important to highlight, however, that the majority of MSers do not become severely disabled. Here’s a stat for ‘ya, from our friends over at the MS Society in the UK, “…Two-thirds of people who have MS remain able to walk, though many will need a walking aid (such as a cane or crutches) either intermittently or permanently.”
Myth 5: MS causes people to stop working
I am an example of debunking this myth as I've been with living with MS for three plus years and work full time. I called in sick only once, on a day that fatigue hit me hard. I think it was the fifth time I called in sick in the nearly 20 years I've been with my company (gasp!). I kid. I think it was the sixth time I called in sick…
Many others also continue working after getting an MS diagnosis while others take a break and then return to work after dealing with a relapse. Some working MSers require accommodation (companies in the US are required to provide assistance for reasonable accommodation requests) while some MSers simply cannot work due to severe disability. The important thing to remember, I think, is to take your time in the decision to work or not to work.
Bonus Myth: There is a cure for MS
Me and 2.5M other MSers in this world really wish this were true. Unfortunately, there is no known cure yet we continue to have hope as doctors, researchers and others continue to research, research, research.
It’s all very frustrating, isn't it? What tops your list as one of the biggest myths out there about MS and what can we all do to debunk it?
Take care of yourselves,
Multiple Sclerosis Society, UK website, “What is MS? First Questions”
National Multiple Sclerosis Society website, “What We Know About MS, FAQ’s” http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/faqs-about-ms/index.aspx
CNN inhealth.cnn.com, May 2013, “7 Myths About Multiple Sclerosis”
ABC News Go and Health.com, July 2013, “Top 10 Myths about Multiple Sclerosis” http://abcnews.go.com/m/story?id=19752065
*Disclaimer. I am not a medical professional nor do I claim to be. These are just my thoughts about things that I've heard and read through the years. If you experience any of the symptoms described here, please consult your physician and/or a neurological specialist right away.