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. Costco is pushing the BBQ’s and Patio sets and you’re frantically planning Spring Break for the family.
Not to mention the fact that you’re putting everything together “tax related” like a psychopath due to procrastination. Spring for me as a kid of course was always fantastic. 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 Spring meant still recovering from overeating during the holidays, filing taxes, spring cleaning madness etc. Ahh the joys of adulthood.
This is what the month of May looks like for most. Although your version may be a tad different if you are 1 of the 2.8 Million people worldwide that are living with Multiple Sclerosis. Now take us to May 30th and that date has a completely different meaning.
May 30th is World Multiple Sclerosis Day (Insert the color orange here…no really. Orange. Lots of Orange) If you are reading this, then you have witnessed the plethora of Orange ribbons and advertisements raising awareness for the MS Community. I will be upfront and transparent on the topic because if you’ve read any of my previous columns, well then 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 May 30th.
While yes I believe that it’s important to raise awareness for Multiple Sclerosis and the MS Community, I firmly believe this should be something we focus on all year round. I tend to despise commercialism in every facet and lean towards a more organic and consistent approach to awareness and support; regardless of the subject matter. So I ask you, the reader, to have an open mind about World MS Day if you’re a bit salty like me. While it’s a great way to educate and learn about MS- it’s also a topic that should be carried on throughout the year. Consistency is key in any aspect of life right?
Let’s dive into how we can do our part. Or better yet, what exactly is our part? You may be someone living with MS or maybe you’re a spouse or family member of someone living with MS. Either way the support and educational aspect of the disease runs about the same.
KNOWLEDGE IS POWER
When I was first diagnosed in Sept 2019, I scoured the internet for information. Probably not the wisest choice as one article said my disease was manageable while the other painted the picture that I was dying. I can’t tell you how many times I hear “stay off the internet” but click away I did.
Note: When doing research of any kind it’s vital to seek credible sources. Scrolling through a chat group where patients are counting down their days and preparing their own funerals will
send anyone into panic mode. Don’t take advice from your neighbor who “knows someone from work with MS”.
A month after diagnosis, I had 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. It was an all hands on deck situation. Valuable sources would include pretty much anything published by the MS Society or Multiple Sclerosis Foundation but your options for accurate information extend beyond just those 2 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 of MS because in all reality…we are all giant orange question marks!
It may be a good idea to follow a Podcast about MS as well, as many often have Neurologists, Physicians and MS Researchers speak on their shows. Depending on what medication you are on, your provider may offer resources such as support groups, meetups, seminars/webinars etc. Everyone is different. As for me, I don’t personally like attending support groups but you have 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 complaining about how much their lives suck in a circle.
There are also opportunities out there for spouses or family members of those living with Multiple Sclerosis. You can search locally or even find events locally through the MS Society’s website.
I always say expose yourself to as much as possible until you find the right algorithm that suits your personality and needs. If attending a 3 hour long seminar isn’t your cup of tea, maybe shoot for a book on autoimmune anti-inflammatory diets or find a local yoga group to reduce stress (which can alleviate MS flares).
SEND OUT THE INVITES
It can be a tricky little pickle educating your friends, family or even co-workers about what you’re going through with your health, as MS is a mysterious, questionable and often rebellious phantom. How can we bring awareness to people with a disease that’s 90% invisible?
Be honest- Transparency is key with 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% of what you’re actually facing. If you’re drained from remodeling your downstairs bathroom, 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 to many as “getting 2 nights sleep after spending the day standing at the DMV all while battling a bad flu”. I can always see their eyes widen a bit more than if I had just said “I’m exhausted.” Details can paint a more accurate picture for someone that may not understand much about 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. I’m sure they’ve dragged you to a Comicon Convention or asked you to sit in on a timeshare presentation so they can get those court side seats to the Lakers game.
Don’t be offended by questions- How can you expect someone to “get it” when you don’t want to share? Being upfront that it’s okay 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.” Although I tend to lean on the side of “too much sharing” at times, either way, you know your limits and boundaries. Always stay within the parameters that make you comfortable when sharing the gory details of our less than perfect illness.
Get them involved with 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?
LOOKING FORWARD - NOT BACKWARDS
Scientists and medical professionals have been researching Multiple Sclerosis for decades. While the first treatment became available to MS patients in 1993 there are now over 20 different medications available to treat Multiple Sclerosis and slow down its progression. Although steroids have been used since the early 50’s to assist in slowing down progression. Neurologists, Medical Researchers and Scientists are still finding new information about our “giant orange question mark” of a disease. It wasn’t until recently that scientists released a possible link between MS and EBV (Epstein-Barr Virus). Slowly but surely progress is being made towards hopefully one day finding a cure.
As for my opinion on the matter, I would honestly like to see more options available in the US and Worldwide for those living with Multiple Sclerosis. The fact that Stem Cell Therapy is not easily obtained in the US haunts me. I hear testimonies of MS Warriors traveling outside the
Country to participate in HSCT regardless of the hefty price tag, to where it has changed their lives and significantly reversed their condition. However, the fact that this treatment costs more than $125,000 is not realistically achievable for the average family. I would like to see more options being available towards funding for HSCT trials where this could eventually be a viable choice for MS patients.
What about the process after initial diagnosis? While I went into “Research until I pass out mode” 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 patients upon receiving their diagnosis. What do I mean? I mean having support and programs readily available to patients by their Physicians, such as Support groups, seminars, grief counseling etc. I and many MS warriors I know were never given anything more than the words “You have MS, let’s talk about treatment.” This to me is unacceptable. If grief counseling is offered right off the bat I could see the likelihood of developing crippling depression decrease significantly.
I would like to see more options as far as medical assistance goes for those living with MS. Assistance along the lines of appointment scheduling, medication refill management, infusion scheduling etc. I feel that this is something that is completely overlooked and not deemed as “necessity”.
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, MRI’s, 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 somedays I feel as though I need an assistant to handle everything and then just tell me when and where to show up for something.
MY TAKE AWAY
While we are all reminded by the consistent cascade of orange being flung around the MS Community on May 30th, I urge us all to keep this momentum up 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 Patients and 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. Our voice does matter but we obviously can’t take on an army alone.
The commercialism that has encompassed each month pertaining to a variety of causes and illnesses is frequently used as a tactic to fundraise and obtain additional support for that month. Yet in my opinion it should not be considered as a “fad” or “trend” and when the month is over all of a sudden we show zero interest in that cause or illness. Consistency is key in any movement and change does not happen overnight.
So as you seed your lawns and frantically file those taxes, I encourage you to advocate for yourself as someone living with Multiple Sclerosis. 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.
“A Hot MS”
A Hot MS is now working as an advocate for disability and multiple sclerosis, working to establish her career as a motivational speaker and using her original music to focus on motivating others to be empowered and positive regardless of their limitations or struggles in life.
She is on a mission to widen the lense of perception in the world of invisible illness and hopes that her voice can be a voice for change. “When there’s no pretty way of telling your story, tell the truth.” says A Hot MS. Her goal is to bring light into the darkness we face. To allow those struggling to use their pain as fuel to keep going. To encourage warriors.
To find out more about A Hot MS please visit www.ahotms.com She can also be found on IG and FB @ahotms