Ahh, March. Spring is right around the corner. Everyone’s front lawn is starting to get the “growing memo” again, and the likelihood of breaking out the Birkenstock sandals is getting more realistic.
As a child, March was always exciting. Spring break was just around the corner, meaning my family and I would be venturing out on some small vacation or road trip. Yet, as the years went on, March meant still recovering from overeating during the holidays, filing taxes, March Madness, and more adult-related ventures.
However, your version may be a tad different if you are one of the 2.3 million people worldwide living with multiple sclerosis (MS). Now, March has a completely different meaning.
March is Multiple Sclerosis Awareness Month. If you’ve been involved in MS awareness, then you have witnessed the plethora of orange ribbons and advertisements encouraging people to stay informed about MS. I will be transparent on the topic because if you’ve read any of my previous columns, you know that’s just how I roll — I like to lay it all out there. To be honest, I sort of have a love/hate relationship with the month of March.
While I believe it’s important to raise awareness for MS, I firmly believe this should be something we focus on all year-round. You may be living with MS or maybe you’re a spouse, caregiver, or family member of someone who has the condition. Either way, the support and educational aspect of the disease runs about the same.
Check out the ways I believe we can honor the cause of MS awareness in March and during the rest of the year as well.
When I was first diagnosed with MS in 2019, I scoured the Internet for information. That was probably not the wisest choice, as one article said my disease was manageable, while another painted the picture that I was dying. I can’t tell you how many times I heard “stay off the Internet,” but click away, I did.
Within a month after my diagnosis, I’d read through countless articles, listened in on numerous MS seminars, and connected with as many patient advocates as I could. My family also joined in on the pilgrimage to know more. Valuable sources would include pretty much anything published by the National Multiple Sclerosis Society or the Multiple Sclerosis Association of America, but the options for accurate information extend beyond those organizations. Your body is your job, so do your homework.
I found it extremely beneficial to include my husband in my findings. Not only did this make me feel more comfortable, but it allowed him to have a better understanding of the disease.
It may be a good idea to follow a podcast about MS as well, as many often have neurologists, other physicians, and MS research specialists speak about the condition and wellness. Depending on what MS treatment you’ve tried, your provider may offer resources such as support groups, meetups, seminars/webinars, and more. Everyone is different, and it’s a good idea to explore all options to find what works for you. Your version of a support group might be a coffee date with a fellow MS warrior rather than sitting in a room of 20 new faces. There are also opportunities for spouses or family members of those living with MS.
It can be a tricky little pickle educating your friends, family, or even coworkers about what you’re going through with your health, as MS is a mysterious, questionable, and often rebellious phantom. It can be challenging to bring awareness to people with a disease that’s 90 percent invisible. I find that the following strategies can be helpful.
Be honest. Transparency is key when raising awareness for anything. People need to hear the good and the bad. Hiding what you are going through is only allowing someone to see 20 percent of what you’re actually facing. If you’re drained, it’s OK to respectfully decline that invitation to spend the day at the swap meet. Explaining fatigue can be confusing, as we all know fatigue and being tired are two totally different things. I explain fatigue as “getting two nights of sleep after spending the day standing at the DMV, all while battling a bad flu.” I can always see other people’s eyes widen a bit more than if I had just said, “I’m exhausted.” Details can paint a more accurate picture about the quality of life for someone who may not understand MS.
Invite them along. It’s not completely ridiculous to invite a friend to an MS-related event. Make a day of it. You can grab coffee or lunch beforehand. Don’t feel ashamed to take them with you on a day in your world.
Welcome questions. How can you expect someone to “get it” when you don’t want to share? Letting others know that it’s OK to ask questions allows for no hidden secrets in your quest for understanding. I often tell my friends, “I’m an open book. Ask away.” Always stay within the parameters that make you comfortable when sharing the gory details of this illness.
Ask others to join your mission. MS walks are a great way to meet new MS warriors, but also include your already-established circle of friends and family. Make the matching T-shirts, tailgate before the walk, and rally up the troops. Who doesn’t want a team of cheerleaders fighting your cause with you?
Scientists and medical professionals have been researching MS for decades. Although years ago, treatments for MS were still few and far between, there are now a wide variety of medications available to slow the condition’s progression and improve symptoms. It wasn’t until recently that scientists released a possible link between MS and Epstein-Barr virus. Slowly but surely, progress is being made toward hopefully one day finding a cure.
As for my opinion on the matter, I would honestly like to see more options available in the United States and worldwide for those living with MS. The fact that stem cell therapy is not easily obtained in the United States haunts me. I hear testimonies of MS warriors traveling outside the country to get this treatment despite the hefty price tag, but the fact that it costs more than $125,000 is not realistically achievable for the average family. I would like to see more options become available toward funding for stem cell trials where this could eventually be a viable choice for people with MS.
What about the process after the initial diagnosis? As I mentioned, I went into “research until I pass out mode,” but not everyone is going to think this way. It can be easy to feel the need to shut down and crawl into a hole of worry and depression. I truly would appreciate knowing there are resources readily available to people upon receiving their diagnosis. Like many MS warriors I know, I was never given anything more than the words, “You have MS, let’s talk about treatment.” This, to me, is unacceptable. If counseling or support were offered right off the bat, I believe the likelihood of developing depression would be reduced significantly.
I would like to see more options as far as medical assistance goes for those living with MS, particularly in terms of appointment scheduling, medication refill management, infusion scheduling, and more.
I have often said that being sick is a full-time job, and I know I’m not alone in this statement. We are managing appointments, MRIs, follow-ups, medications, insurance verification, co-pay assistance, physical therapy, neuropsychology therapy, balance therapy, and more all while fighting physical pain, brain fog, memory problems, and coordination struggles. Are we being set up to fail? I often tell my husband that some days I feel as though I need an assistant to handle everything and then just tell me when and where to show up for something.
While we all honor MS awareness during March, I urge everyone to keep this momentum going throughout the year. It’s vital to bring more awareness to all invisible illnesses and not to focus solely on one alone. It’s easy to get caught up in our mission as MS advocates, but why limit ourselves to one condition? It’s our responsibility to speak up, bring attention, and raise awareness so that our voice is heard and change is made.
In my opinion, raising awareness should not be considered a trend for a month that goes away as soon as the calendar page turns. Consistency is key in any movement, and change does not happen overnight.
As you seed your lawns and frantically file those taxes, I encourage you to advocate for yourself as someone living with MS. We have not been dealt an easy hand. Some days will offer perfection and ease, while others are days of reflection and making adjustments. Regardless of what the day looks like for us, we are here, we will not stop, and we will find a cure.
MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists’ articles do not reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content is not intended as a substitute for professional medical advice, diagnosis, or treatment.