Ask Me Anything
A group of us who write as patient experts for MultipleSclerosis.net and others from the Multiple Sclerosis Association of America had the opportunity to celebrate MS Awareness month by participating in an Ask Me Anything session on the MultipleSclerosis.net Facebook page. People were invited to ask their MS questions and we doled out our best answers. It was a fast paced hour of responding to the great questions asked and I’ve thought a lot about this after we were done and wondered if there is a pattern to the information needs and questions, and come up with just a few themes.
An early and often asked question is ‘what will happen to me since I have just been diagnosed?’ Having a diagnosis of MS is a very scary thing, especially at first when we are trying to learn all we can about the disease. We often jump to the worst case scenario of being in a wheelchair and unable to care for ourselves, and then as we learn more, we find that ‘what will happen’ is highly variable and for each of us it is different.
“What will help my MS?” In other words, those of us who have MS want to be proactive and do all we can to slow, delay or even stop our disease progression. This question could be addressed through the disease modifying therapy (DMT) drugs, exercise options or lifestyle changes with diet. There are many things that we might try to keep ourselves healthy and functioning .
“If they can’t cure me, what will help me with …. “ Coping with symptoms is another major thread – questions about spasms, anxiety, pain, bladder control, intimacy, and other problems are common. It helps to ask those questions because someone else is going through the same experience and can relate and share their own tips on how they cope."
“Is there anything new for my MS?” We are all waiting to hear the next news is better and there is a cure, or at least something different that will stop our disease progression, a new drug to treat our MS that won’t have side effects or risks, and of course something to repair the damage done to our central nervous system.
“There’s no one here for me” or “my family doesn’t understand because I look good to them’ or ‘my co-workers think I could do more’ are themes of how MS can be isolating, and can often make it seem as if we are on this journey alone.
“My (husband, child, friend, etc) has MS and I want to do all I can to help” questions, and we had several of these, shows us that we need to make the effort to let our partners, friends and coworkers understand more about MS and how it affects us personally.
Relationship questions abound in these discussions and the answers are always complex but it is important we keep trying to share our thoughts and voice our needs with the people who are around us regularly – most of them really do want to help make this better for us.
These are the dominant themes I find from our recent session of Ask Me Anything …. and I have to share that I have had many of those same questions myself at some point or another. I hope if you participated online, you found it useful and your questions were answered. But remember, you don’t have to wait for the next Ask Me Anything event - there is a great group of moderators on the MultipleSclerosis.net Facebook page every day, ready and willing to answer anything you might ask.
So go ahead …. Ask Us Anything…. Anytime!!!
Wishing you well,
Do you celebrate your MS Anniversary?