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Sunday, February 1, 2015

Misunderstood

MS is one of the most misunderstood diseases, for a variety of reasons.

A common theme among patients I have encountered is the frustration we feel at the lack of understanding of our illness, and the lack of support. I find that most people who hear the words "multiple sclerosis" have one of two reactions: "The disease is horrific, disabling, fatal, and basically a death sentence", or "what's the big deal? Isn't that just some minor little thing?"



Both of those concepts are incorrect.

MS lies somewhere in the middle of those ideas, but the misconceptions come from lack of education. In addition, the wide variety of disease manifestations and rate of progression between patients causes great confusion. Often, I hear individuals describe someone they know with MS, and they apply those ideas to all patients. "My friend is doing just fine," or "my friend is bedridden," therefore, you must be experiencing the same thing.

Either way, being judged is hurtful.

When we hear that MS is "no big deal," and we should be "doing fine," we are hurt. We feel dismissed, ignored, and belittled when we hear these things, because we have all suffered so much with this illness. We may have "invisible symptoms," things no one else can perceive, but cause so much pain for us on a daily basis. We may have suffered dozens of disabling relapses, but we have recovered and now appear fairly normal. To hear that it is "no big deal," discounts our experience, and our pain.

When we hear MS is "basically a death sentence," we know this is incorrect. However, it is still hurtful, because it creates negative feelings, causes anxiety, and creates fear. We all know that we can still lead long, happy lives with this disease, but this misunderstanding can still have an impact on us psychologically.

Once we receive our diagnosis, we have a responsibility. We should take on the challenge of educating our friends and family about our illness. We become the teachers, the educators, and we are responsible for ensuring that everyone we come in contact with will have an understanding of our illness. MS is still considered rare, with the prevalence being approximately 1 in 1000 in the US currently. By this statistic, we can see that we will all encounter someone in our lives who is "clueless" about our illness. We should see this as a clear obligation, to disseminate accurate information everywhere we go.

These prejudicial ideas are nothing but stereotypes, and we should do everything in our power to wipe out ignorance when it comes to our illness. It is incredible how hurtful it can be to feel misunderstood, isolated, and dismissed. Unfortunately, we may even encounter medical professionals who are not well educated when it comes to MS. Even in these situations, it is our obligation to try to educate.

Many health professionals do not specialize in Neurology, and have very little experience and training regarding MS. Don't hesitate to try to pass on information everywhere you go, and try to reference legitimate resources of information. If you find that anyone won't take your word for it, simply access a reliable site such as the Multiple Sclerosis Association of America (MSAA,) http://www.mymsaa.org, or the National MS Society http://www.nationalmssociety.org.
Your credibility will increase when you reference other established sources of information.



I believe that MS awareness is increasing every day, and that is a wonderful thing; but if we take on the obligation of spreading awareness, we can have a dramatic impact. Let's all try to educate our own family and friends, and the information will spread like wildfire. Feeling misunderstood or stereotyped is one of the most damaging things an MS patient can experience, but the cure for ignorance is education, and we can each have a hand in providing this much needed information.


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