Multiple sclerosis (MS) is a complex condition that affects everyone differently. When faced with a new diagnosis, many patients are confused and scared by both the uncertainty of the disease and the prospect of becoming disabled. But for many, the reality of living with MS is far less frightening. With proper treatment and the right medical team, most people with MS are able to lead full and active lives.
Here’s some advice from three people living with MS, and what they wish they had known after being diagnosed.
Theresa Mortilla, Diagnosed in 1990
“If you’re newly diagnosed, contact the MS society almost immediately. Start gathering information on living with this disease — but go slowly. There’s really such a panic that happens when you’re first diagnosed, and everybody around you is panicking. Get information to educate yourself on what’s out there in terms of treatment and what is going on in your body. Slowly educate yourself and others.”
“Start to form a really good medical team. Not only a neurologist but also maybe a chiropractor, massage therapist, and holistic advisor. Whatever is a supportive aspect in the medical field in terms of doctors and holistic care, start to put a team together. You might even think about having a therapist. A lot of times, I found that … I could [not] go to [my family] because they were so panicked. Having a therapist might be really beneficial — to be able to say, ‘I’m scared right now, and this is what’s going on.’”
Alex Faurote, Diagnosed in 2010
“The biggest thing I wish I had known, and I learned it as I went along, is MS is not as uncommon as you think it is, and it’s not as dramatic as it seems. If you just hear about MS, you hear that it attacks the nerves and your sensations. Well, it can affect all of those things, but it doesn’t affect all of those things all the time. It takes time for it to get worse. All of the fears and nightmares about waking up tomorrow and not being able to walk, those weren’t necessary.”
“Finding all of these people who have MS has been eye-opening. They’re living their everyday life. Everything’s pretty normal. You catch them at the wrong time of day, maybe when they’re doing their shot or taking their medicine, and then you’ll know.”
“It doesn’t have to change your whole life immediately.”
Kyle Stone, Diagnosed in 2011
“Not all faces of MS are the same. It doesn’t affect everybody the exact same way. If someone had told me that from the very beginning, rather than just saying ‘you have MS,’ I would have been able to approach it better.”
“For me, not rushing and jumping into a treatment without knowing how it was going to affect my body and affect me moving forward was really important. I really wanted to be informed and make sure that this treatment was going to be the best treatment for me. My doctor empowered me to make sure that I had control or some say over my treatment.”