Your MS Is Not My MS
Last updated: October 2022
There is one thing that us multiple sclerosis patients have in common. We get a lot of unsolicited advice. From the moment that we reveal our diagnosis, we are bombarded with information. First, that information comes from our healthcare providers or our own research into this chronic illness. With many things unknown about MS, some of that information is contradictory. After a couple of years, we get used to it. We get pretty good at sending off strangers. What is more annoying, and sometimes painful, is getting unsolicited advice from our fellow multiple sclerosis patients.
We all learn from each other
It is important to understand that I am not talking about the sharing of information. Most of what I have learned about my illness has come from other people with multiple sclerosis. We learn from each other and we teach each other. It is an important part of living with this chronic illness. Sometimes no one understands your difficulty more than someone else on that same journey. Having people who understand what you are going through can make it easier. “MS patients have found that social support may moderate the impact of negative life events and have a positive effect on quality of life.”1 But, there is a point at which a line can be crossed.
The line between being a friend and giving medical advice
Unasked for advice can add more stress to my existence, especially if it is a fellow MSer with whom I’ve shared issues. We will discuss physical or mental problems that come along with MS. Because there are so many different symptoms, I can often share my experience with many people. It is often a relief to learn tips or tricks that help you through. The difference with this mutual sharing is that it is both mutual and sharing. A fellow MS patient telling me what I should be doing or taking crosses a line. There is a line between being a friend and being a healthcare practitioner.
How we each choose to treat our condition is a personal decision
Although we may share the same illness and many of the same symptoms, each of us is very different in how we choose to take care of ourselves. There are thankfully many different disease-modifying therapies (DMTs) on the market. The choice available to us is wonderful. From earlier therapies like Betaseron to the newest infusions and pills, we have a variety of medical options. What I have chosen for myself is for me. What you have chosen for yourself is for you. Even something as a benign piece of advice regarding over-the-counter pain medication can be inappropriate. It is not the drug itself that is inappropriate. It is deciding to give that type of advice when no one asked.
We should avoid giving unsolicited advice about MS
No, I am not saying that people are bad for giving advice. No! It is not my overall point. My point is that having the same illness as another person does not make you any more knowledgeable about another person’s plan of treatment. We should avoid using our own treatment decisions as the best ones. They may be the best ones for us. They may not be for someone else. Although we may feel like we are being helpful, unless we are specifically asked an opinion, we really shouldn’t give one no matter how much we may want to do just that.
Being a good listener is the most helpful quality
Having multiple sclerosis does not mean that we know enough to tell another multiple sclerosis patient what they should or should not be doing. Even a recommendation like taking Advil for pain or inflammation can be unwanted, unneeded, and potentially dangerous. So, let’s all check ourselves and make sure that we are not giving advice when we are not asked for it. It is tough to see someone who may be suffering or in pain. That still does not give us the right to cross that line in the sand called “no one asked you for your opinion.” We have enough stress in our lives without inadvertently causing it for a fellow MS patient. Sometimes the best route is being kind, being a good listener, and being quiet.
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