What I Wish I’d Known: Patient to Patient Advice About MS
Veteran MS patients share their invaluable knowledge on treatment plans, finding a community, handling flares and so much more.
It’s totally normal that a multiple sclerosis (MS) diagnosis may come with anxiety, concern, and a lot of questions. After all, it’s a lifelong autoimmune disease, and there are many different scenarios for how it might progress. Talking to your doctor about the type of MS you have and what it will mean for your daily life now, as well as in the long term, is a good first step. But you know what’s also invaluable? Learning from other MS patients who have been in your shoes, and can offer insight on everything from mental health to telling friends and family to treatment and more. (Plus, they’re the best cheering squad!)
Overtime, you’ll surely develop your own support system of fellow MS patients. But, in the meantime, we spoke to a bunch of people who were more than happy to share what they wish they had known (and done!) when first diagnosed with MS:
What I Wish I Knew About…Treatment
Take your time. “When I was first diagnosed, I didn’t know how steep a learning curve it would be for those first few months. For those of us without medical backgrounds, it can take a little while to get 'up to speed' and that’s ok,” says Alexandra Levin, 37, of New York City. “It’s OK to take your time, read and digest information, and talk to a number of doctors as you learn about the disease, medication options, and what it all means for you. What’s most important is finding the right treatment option that works for you. I am on a twice-a-year infusion schedule, which gives me the freedom to focus on my career and my family.”
You don’t have to settle. “Remember that everyone has a different experience and journey with MS and the meds. You will most likely need to try more than one medication; that’s normal,” explains Ellie Shannon, 33, who lives in Victoria, Canada. “Don’t put up with extreme discomfort if the side effects are intolerable. It's not worth it and there are other options. The treatment shouldn't make your life a living hell or feel worse than the actual disease it's supposed to be protecting you from.”
You’re stronger than you think. “I wish I had known how to emotionally prepare for treatment,” says Susan O’Connor, 50, of Ventura County, CA. “I wish I knew that the shot that was shoved in my lap upon my first appointment with my (then) neurologist—‘NO WAY am I giving myself a shot!,’ I thought at the time—was going to be the success that it has proven to be for me for the past 20 years.”
Medication isn’t an enemy. “You aren’t showing the disease who is boss by rebelling against the medicine,” says Channing Barker, 30, of Springfield, AR. “Upon diagnosis, I felt really empowered because I was introduced to a woman who had created a full life on the disease-modifying treatment I was on. Having that role model of what could be if I stuck to taking my medication was crucial.”
Options are always improving. “I would tell my younger self to have hope that new treatments will become available,” says Sheldon Metz, 33, of Dallas, TX. “The disease- modifying therapy I am now taking was not available when I was first diagnosed, and I have improved since starting this medication.”
What I Wish I Knew About…Doctors
Chemistry is important. “Unless you absolutely love your doctor from the first meeting, I suggest looking around until you find a doctor that completely understands what you’re going through as an individual,” says Cory Martin, 40, of Venice, CA, and author of the memoir Love Sick. “Voice your concerns, ask questions about all the various treatments, tell them how you want to deal with this disease, and ask how they envision your treatment. Find someone who can be a partner and help guide you in this journey. I’m so glad I sought a second opinion because my first doctor was all wrong for me. I now consider my MS specialist a friend who has my back in every situation.”
Find a great neurologist, too. “Having the right neurologist is very important,” says Diane DeVillers, 64, of Eugene, OR. “A neurologist knows way more than a primary doctor to help you cope with the disease. But even with your neurologist, you have to find the right one who makes you feel comfortable and knowledgeable about your type of MS.”
Ask all the questions. “You have to advocate for yourself in these appointments,” says Barker. “That means researching medication changes beforehand if necessary and keeping up with the latest data on MS studies. Email or call until you get an answer — you have to bug sometimes. Ask the questions you think are ‘dumb.’ Believe me, they're not.”
Rely on yourself most of all. “Doctors are vital to my overall success, but they are not there every day,” reminds Metz. “You have to find the strength within yourself to fight the disease on a daily basis and communicate honestly with your doctors about how your disease is progressing.”
What I Wish I Knew About…Relapse/Flares
The triggers can vary. “When I was first diagnosed with MS, I spent hours searching the internet for information about the disease. I began to develop an idea about how my MS would progress. Later, I learned that what causes a relapse in one person may not in someone else,” says Metz. “For example, I struggle in heat, but I have met hundreds of people living with MS who struggle in the cold. I wish I would have known that my journey with MS is my own unique experience.”
… as can the lasting results. “People who have the relapsing-remitting type of MS can have symptoms that get worse during a relapse, but when they get rest, the symptoms will go away, like weakness in limbs, eye issues or vertigo. But with the progressive kind of MS, when I got weakness and paralysis in my right leg, it was permanent,” explains DeVillers.
You will persevere. “Yes, they are scary. Yes, you will survive and you can get through this,” says Shannon. “If at all possible, find someone you trust to talk to about what you are experiencing. Be it a friend, family member, doctor, counselor, mentor from the MS Society, or stranger on the Internet. It’s important to have people you can reach out to so you don’t feel so alone, even if they don't fully understand your situation.”
Worrying isn’t always productive. “This disease is incredibly unpredictable and sometimes it’s hard to get out of your head about it. I wish I hadn’t spent so much time worrying about the what ifs—what if I wake up and can’t walk one day? What if my cognition worsens? I wasted a lot of energy worrying about what could happen instead of concentrating on what I could do at that moment,” says Martin. “What I’ve found over the last twelve years is that nothing happens overnight and if the thing you dread or fear does happen, you get through it. I’m a lot stronger and more resilient than I ever thought I was.”
Don’t be afraid to ask for help. “You’ve got to let others help you when you are down, and you’ve got to let them know when you need that help,” reminds Barker. “Let your friends drive when you can't feel your legs. Tell your professors that you're struggling. There’s more grace than you can imagine. Finding good friends who are there for you when you're down; that’s so, so important."
What I Wish I Knew About…Myself
You don't need to be hard on yourself. “You are allowed to nap, to study differently than others because of the cognition issues, to eat less of this and more of that, to be in bed by 10:30 on a Friday. You don’t have to attend every event,” says Barker. “You are learning the ropes and it’s going to be tough at times, but you have to work with this disease, not against it.”
Focus on mental health, too. “You need a support system of positive people, those who create toxic emotions leach away your energy,” says DeVillers. “My partner is my gatekeeper. He helps me have a positive attitude. He knows, just by looking at my face, when I need to lie down and when to keep me cool during the summer. Keeping good mental health is everything. They say that 70 percent of people with MS get depression. I found that exercising and keeping myself busy helps my mental state and distracts me from feeling my back pain.”
Life will go on—and be good! “There is a lot of fear when diagnosed that the plans you have are now impossible to reach, but that is not the case. I work at a great company in a job I love. I am married to my best friend and we have a 5-year-old daughter,” says Metz. “Does MS make life more difficult? Yes. Does it make enjoying life impossible? No.”
You are resilient. “I wish I knew that this would make me stronger as a person and better able to cope with whatever comes my way. As my partner says, I’m a badass boss that can handle anything,” says Shannon.