Community Views: The Strangest Comments Heard by the MS Community

If there is any doubt that multiple sclerosis (MS) is one of the most misunderstood diagnoses, then all one has to do is be a fly on the wall when someone with MS shares that they are living with the condition. 

To find out more about all the ridiculous things people say when they learn someone has MS, we reached out to followers of our Facebook page. We asked community members to tell us: “What is the silliest, funniest, or most face palm-ish response you have heard when you told someone you have MS?” 

Responses from more than 300 community members poured in. Here are some of their answers.

It is your fault you have MS

Doctors are not sure what causes MS. They believe it is triggered by a combination of factors, such as genetics, an abnormal immune response, and environmental factors. Still, that has not stopped some people from blaming MS on someone’s lifestyle, dietary choices, or even negative thoughts. Many in the MS community have been accused of living their lives in a way that made them responsible for getting MS, which is not the case at all. 

“My sister once told me that it was my own fault that I have MS. That I should have taken better care of myself.” 

“I had one girl tell me it was because I watched the news and ‘took that negativity into my body.’ All I have to do to be cured is change the channel?” 

“When I was first diagnosed, the on-call neurologist at the ER said it was my fault because I was not taking vitamins as I should be after gastric sleeve surgery.” 

“Do you think you did something to cause it?” 

That someone is too young – or too old to have MS

Curiously, community members shared that people have told them they were too young or too old to have MS. Most typically, the diagnosis shows up between the ages of 20 and 40, but that does not mean it cannot show up sooner – or later. MS does not discriminate based on age.

“I was in the hospital after just being diagnosed when my aunt said to me ‘You are too old to be diagnosed with MS. Uncle Ronnie was diagnosed at a younger age. You do not have MS.’ I was 44. She still refuses to acknowledge I have MS.” 

“You are awfully young to have that.” 

The right diet can cure MS

So many people shared that strangers are more than eager to comment on their diets, even if they do not know the person well. Diet does not cause MS, nor can diet cure it. 

“A ketogenic diet will cure MS and Hashimoto’s! I have Hashimoto’s too.” 

“You should change your diet. This from someone who has no clue what I eat.” 

“Have you tried cutting out those artificial sweeteners from your diet?” 

“You just need to cut out sugar!” 

Other things can “cure” MS

Yes, there are medicines that can bring relief from symptoms and slow the progression of MS, but there are no cures. A few community members shared that people have suggested some rather unusual “cures” for MS

“Years ago, my friend’s boyfriend asked me why I could not just have the lesions on my brain and spine removed to fix the problem?” 

“They said they had it too, but their MS was cured. I said there was no cure. She said she was cured because her ‘myelins’ were adjusted.” 

Thank you to everyone who offered answers. It is our hope that people who read this better understand what it is like to have MS thanks to your willingness to share your experiences.

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Improving Mental Health and Wellness

MS Awareness Month

Dr. Adam Kaplin, Dr. Annette Okai, Dr. Amy Sullivan, Dr. Mitzi Williams

For this year’s MS Awareness Month campaign, MSAA provided a number of digital resources focusing on Improving Mental Health and Wellness. This campaign featured webinars, a podcast episode, and insights from MS experts covering topics, such as:

  • Purpose in Life (PIL) – This research area focuses on the interactions between mind and body in powerful ways. PIL has been shown to significantly support the central nervous system, cardiovascular health, and even the immune system. Explore the concept and learn how to develop and foster your own Purpose in Life in the archived webinar, “Finding Purpose in Life.”
  • Depression and Anxiety in MS – Depression is a common and often overlooked symptom of MS, while anxiety is perhaps the most taxing and under-treated psychological effect of living with multiple sclerosis. Discover helpful strategies to manage these significant mental health issues in the archived webinar, “Managing Depression and Anxiety in MS.”
  • Care Partnering – Learn about the often overlooked physical and emotional needs of care partners and how to avoid care partner burnout in the podcast episode, “Caring for the Care Partner.”
  • Wellness Strategies – Find helpful strategies to better manage four key areas that impact mental and emotional health – sleep, staying connected, diet and exercise, and self-care – on My MSAA Community.

Learn more about Improving Mental Health and Wellness through these resources at: mymsaa.org/ms-awareness-month

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I cling to hope that everything will be okay

By Penelope Conway

A ray of hope and sunshine on a cloudy day.

No one hates multiple sclerosis more than those of us living with it. When something happens that I can’t do anything about, I used to get frustrated and even angry. I hated not being in charge of my life, my brain and my body. MS gave me a wake up call on that kind of thinking.

My mental health was in danger of collapsing. Does that sound like I’m over-exaggerating things? Well, I’m not. Life was changing too fast and I was caught in a mental fog of weariness and disbelief.

The morning after my diagnosis I awakened and for a moment not just forgot what I had planned for the day, but who I was, what day it was, where I was and basically everything and anything about life. That was my morning wake up experience.

For a few minutes I sat in my bed and my mind was completely blank. Nothing, and I mean nothing, was there. It was a weird feeling. Most of the time that kind of thing happens when I’m startled awake from a deep sleep. It just takes my brain a bit longer to wake up than the rest of me.

I found it hard to explain to people what I needed and why that need existed when the person I was talking to couldn’t physically see the struggle I was facing. Opening your heart up like that can be a scary thing. After all, you are sharing a weakness and need with someone hoping they will handle it with care and support. That doesn’t always happen, but it’s important to try.

Because of MS, I have learned that sometimes in life we aren’t going to know what to do, and that’s okay. Sometimes, we aren’t going to know why things happen, how to fix them, or when or if they will get better. Sometimes, we are going to stumble our way through our day…many times literally. Sometimes we will find everything going well, then all of a sudden get slugged in the gut from out of nowhere with circumstances that change our day and life forever.

Sometimes life just is. As I say many times a day…it is what it is. I could allow everything in life from MS physical challenges, unbearable pain, financial difficulties, and emotional stress wear me down to the point of collapse or I could hang on when I’m at my weakest and cling to the hope that everything will to be okay and remind myself that my life is full of meaning and purpose.

When you’re in the middle of something awful, it’s hard to believe that things will work out. It’s hard to even believe that you will make it to tomorrow with the weight you are carrying and the dark clouds that are looming, but I can assure you, you are going to make it.

Think back on everything you have been through in life. Some of the difficult times seemed impossible to endure and had you sinking in despair. You have been hit with some awful moments. Things that even the bravest and strongest of people would collapse under, but you made it.

You are not alone with your MS struggles. No one living with MS has an instruction booklet on how MS is going to affect people or something that shows them what they should do with each new challenge or symptom they experience. MS didn’t come nicely packaged in pretty wrapping paper and tied together with ribbons and bows. If it did I would give it back…with a wedgie.

When you start to feel lost along your journey, try not to hide yourself away. Step out from the fears and keep walking the road laid out in front of you. Even though MS may be difficult at the moment, I know you can do this. I know you are going to make it.

Divide your day up into small segments and celebrate each one that you complete. Did you wake up today? Check! That’s your first victory to make note of.

You will find by celebrating each moment, that your day is filled with many more victories than defeats. Then when your day is over, you will know that you fought great battles, and although bruised and limping…you made it!

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Purpose in Life

This famous quote, “The purpose of life is a life with purpose” resonates with me.  I often stop and think about my purpose in life.  I am a mother, daughter, sister, aunt, friend, wife, caretaker, and a social worker.  As I reflect on my purpose, I have come to learn that I enjoy helping others.  Working for MSAA offers me the opportunity to help the MS community.  I hope to provide a safe place for many to call in for help and to find support.  I feel a great sense of pride knowing I can help and navigate others through uncharted waters in a time of need.

So, my question to you is: What is your purpose?  Is it maybe being a friend, maybe being a spouse, or maybe simply it is doing things that bring you happiness?  Sometimes finding the answer is easy, and sometimes it takes time to see where we are appreciated most. If you are struggling to answer this question, do not be afraid to turn to others for guidance and friendly suggestions. Those around you often see the gifts that you exhibit to them that you may not recognize in yourself. This could help you to understand what your purpose is and how to make the best of it.

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Feelings and Flash Mobs: Mental Wellness Looks Messy

By Stacie Prada

Life is not a straight line. Grief, coping, adjusting and recovery don’t follow straight lines from feeling bad to better. They’re more of a spaghetti diagram of past merged with present, conflicting emotions colliding without logic, and highs and lows mixed together as conditions change, time progresses and we adjust.

I can feel sadness, loss, fear, anxiety, love, connection, hope, strength and contentment in a single day. Usually I do. Often, I feel a combination of them all at once, and I think it’s normal for me. 

I’ve learned flash mobs make me cry. Every time. They can be upbeat, fun and joyful, and still tears stream. I love the combination of surprise, music, choreography, people coming together and people dispersing as quickly as they started. They make me happy. They also trigger overwhelm for the connection, surprise and happiness they elicit.

I can analyze flash mobs for why I can’t keep my emotions level while watching them, and I can accept I don’t need to fix it.  For me it’s a great example of how combinations of feelings can simultaneously occur when they aren’t usually related.

Remembering that feelings can be randomly triggered and illogical helps ease the desire to find the cause, the solution and validation. If I assume every feeling is valid yet temporary, I’m less likely to obsess over them.  They can surprise me, consume me and evaporate as powerfully and fleetingly as a flash mob.

Certainly, if I’m suffering, I want to shorten the timeframe of feeling bad. If suffering persists, I want to have help.   I know I’m susceptible to depression given my multiple sclerosis, and I watch for it.  If I know not every feeling has a logical reason or need for fixing, fleeting emotions are less worrisome.

When feelings persist, having a well-rounded support team is crucial for my mental health and living well with MS. This team includes:

  • Primary care provider who tends to my overall health
  • Neurologist who monitors my MS progression, symptoms and mental health
  • Counselor to call if things seem too much for me to conquer solo
  • Friends and family who will listen and help me assess my condition
  • MS Self-Help Group where I can share and learn from people who have MS

Not everyone has access to health care, and I encourage anyone who needs help to contact MSAA to see if there are services and support that might help. If you have a different condition and don’t have a care provider, search “mental health services near me.” Local health departments often have a web page with a list of resources.

To contact MSAA, call their helpline at (800) 532-7667 to speak with one of their trained staff members, or email them at msquestions@mymsaa.org.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Enjoyable Ways to Improve Your Mental Health

Mental health plays such a large role on your psychological and emotional well-being. It is super important to find enjoyable ways to improve your mental health. To help get you started, here are some cool ideas.

Sleep

Getting a good night’s rest is not only enjoyable, but it also comes with amazing benefits. Catching about 8 hours of sleep has been shown to strengthen the heart muscle, improve memory, and it greatly lowers your risk of depression and anxiety. Wow! *searching for my favorite pillow and blanket as I write this*

Pet Your Pet

Pets are AMAZING for improving mental health. Dogs are amongst the most common pets known to provide emotional support for individuals, but they aren’t the only ones. If you have a pet that brings you joy and happiness, you should totally pet your pet. Ha! See what I did there? Whether your fur baby is a dog, cat, bunny, squirrel, or guinea pig, petting your pet has great emotional benefits. I have a 4-month-old puppy named Oreo, and he definitely improves my mood. I love to snuggle him with his wittle cute fuzzy wuzzy face and his adorable big brown eyes and little curly tail and…focus, Selena, focus. *Inserts adorable picture of Oreo below.*

Doodle

Yes, you read that right. Doodle! Doodling and scribbling have proven to relieve stress and anxiety for individuals who are feeling overwhelmed. Doodling has also shown to help improve focus and the best part is that it’s fun too. Next time you’re feeling overwhelmed or anxious, bust out the pen and paper and give doodling a try.

Even though these cool ideas are fun and helpful, they aren’t a one size fits all deal. You know yourself better than anyone else does, so I encourage you to find something that is enjoyable to you. Whatever that thing is for you, do that whenever you notice your mental health is in need of some improvement and have fun with it. You are the best person to find enjoyable ways to improve your mental health.

You got this.

*If you ever find yourself struggling to manage your mental health on your own, please be encouraged to reach out to your physician or a mental health professional for help.

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Mental Health and Wellness

By Chernise Joseph

I’ll be real with you, for this month’s topic I struggled to come up with something that felt at least a little optimistic, but then I realized my best response is just to be honest.

Mental health is a tricky thing to discuss. For one, everyone’s story with both mental health and multiple sclerosis is different. There are some of us that are lucky enough not to struggle much with either, but the older I get, the more I realize those sorts of people are rarer than I realized. All my life, I’ve heard how “everybody’s going through something,” and my response was almost always “but they aren’t going through what I’m going through!” as if that somehow validated how I felt despite never actually feeling any better.

Here’s the thing with mental health: just like multiple sclerosis, it’s an invisible ailment in many people and that, to me, is the most unfair part of struggling with either because I’ve noticed the empathy factor from others in the world drastically lowers when you’re able to smile and–to them anyway–you “look okay.” Side note: I’m definitely including myself in that critique, especially pre-MS.

Three weeks ago, Texas did everything it could to put my mental health to the test. Yes, the entire state of Texas decided to perform some sort of survival exercise to see if we’re all prepared for the apocalypse, apparently. In southeast Texas where I live, the temperature rarely drops beneath 30 during our coldest days in winter. We’ll get some snow flurries here and there, but otherwise “moderate” would be a generous descriptor for the 3 months of winter we get each year. However, February decided to deliver a one-two (three, four, five…) punch and not only give us single digit days, but also complete it with snow and ice. I like to think of Dante’s icy layer of hell when I describe what happened that week to people because I had no idea cold could be so awful.

I’ll set the scene: I’m caring for my ailing mother, the temperature is steadily dropping outside, and all at once, the power goes out. It’s around 11AM on Monday at this point and we’re hearing reports from family members that their electricity is out, too, and they’re at least an hour away in Houston. It wasn’t a local thing, it was everywhere. Immediately, panic sets in. The snow has started to fall outside, and the temperature has as well, though we were thankfully still in the double digits. I call a close friend for help because already I’m beginning to see cars collide outside from the icy layers forming on the street. We’re Texan, y’all. We barely know how to drive in the rain.

My mom and I decide that calling an ambulance for her would be the best plan. She’s medically fragile and we knew the hospital would at least have power and nurses who could care for her. The medics arrive and I had to beg them to ignore COVID procedures and allow me to ride with her to the hospital. They agree and let me sit up front. While they’re loading her into the back, I overhear on their radio that all ambulances would be grounded at 5PM. At least in the town where I reside, we were going to be on our own through the night… I think it hit me right then that this wasn’t just a sit around and have hot cocoa situation.

The hospital wasn’t as nice as the paramedics and I couldn’t stay despite the winter storm. Luckily, I have a group of nice friends with big trucks who took a break from delivering firewood to come and pick me up. By then, the snow had started to fall harder than I’ve ever seen before, and we were ice skating through the city trying to figure out a game plan. We drove through town and saw dozens of people dressed up in snow gear roaming the streets in search of warmth just like we were. The power was out permanently it seemed and none of us had planned for that. I think back on it now and forgive myself because there wasn’t a right answer to the situation despite knowing, logically, that a little snowstorm shouldn’t have felt like the apocalypse.

The next few days are a blur for me. We huddled around a friend’s fireplace and ate what we could find while the power and water were down, charging our phones either in the car or in the brief moments when the lights would come back on. It was chaos for everyone, but I think the lesson I got from it was how our mental health can either suffer or improve dependent on how we choose to look at things, not the other way around. That week from hell, its new moniker if I do say so myself, was awful and I won’t try to sugarcoat it. I was lucky to be safe and warm, but I was also fortunate to be surrounded by people with positive attitudes and optimistic outlooks despite how bleak things got.

It was during that week that I experienced the importance of being present again. With the world quite literally frozen over, there wasn’t anything else to do but sit and just be. I got a chance to not think of anything and just sit and cuddle my cat (who had taken up residence in my friend’s bathroom) and wait for life to return to some semblance of how it was, if not changed because of the people who helped me during one of the hardest times of my life.  

*Born in the heat of Texas, Chernise Joseph is an avid writer with perpetual writer’s block. She was diagnosed with MS in 2016 and has been on the ride of a lifetime ever since. Read more from Chernise on her blog millennialwithms.com.

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Resiliency is a Powerful Tool

No secret here-life can be very unpredictable a lot of the time. It can be messy and chaotic and ever-changing. But even after a year filled with such challenge and turmoil as 2020, it’s incredible to see how resilient people are and can be. Yes, life and the changes experienced can have its ripple effects. Impacting not only physical health, but mental and emotional health as well. But it’s how people adapt and overcome these hurdles that helps foster improved wellness of the entire body.

Resiliency, among other aspects, can be an extremely powerful tool when it comes to mental health care and wellness. Learning to adapt to difficult situations and continuing to strive forward despite them helps build resilience. And the great news is-this is a skill that can be learned and taught. Whether it’s teaching yourself the skillset or working with a professional for guidance, building resilience is an important key to overall wellness.

There are different components used to help nurture resiliency, with two crucial ones being self-compassion and self-care. Being kind to ourselves and our bodies is so important for both mental and physical health. This helps to decrease issues with anxiety, stress, and depression. Practicing mindfulness, surrounding yourself with others who support you, and taking care of yourself physically are all key parts to resilience skill-building.

I think many of us would agree that taking time for ourselves and thinking about our own health and well-being usually falls towards the bottom of our daily agendas. This is something that we can all start to do better with. Because taking care of ourselves helps validate that we can take care of others around us too.

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How to Spot a Fake Disabled Person

By Scott Cremeans

If you are reading this post to find out the clues I can teach you so you can spot that faker, then read on. You saw a person park in the handicap space and walk inside unassisted, so you want to call them out. You might have observed an individual use a wheelchair one day and a cane a few days later, and you want to bust them. Well, the truth is: LEAVE THEM ALONE!

But unfortunately, sometimes, they are attacked by a self-entitled morality vigilante that assaults them verbally or worse. I have heard of these onslaughts to be demeaning notes left on a windshield or a vicious verbal violation that left my friend in tears for hours. This abuse was after she felt exceptionally jubilant because her illness had her bedridden the previous four days, and she was finally walking.

Just because you see a person using a wheelchair one day and a cane, the next only shows that disabilities change. The pain level or physical abilities could be high one day and drop like a rock the next day. When you see that person park in the handicap spot and walk in the building with no mobility aid, they could have a heart condition. These invisible symptoms can be as numerous and varied as fish in a lake, meaning: LEAVE THEM ALONE!

The truth is I have heard whispers of a widespread scam of people faking disabilities, and it is simply not true. I heard one person say they let these fakers know they are seen so the real disabled can park there. I then asked him what an individual with a disability looks like, and without giving him a chance to respond, I stopped him. I explained he might have good intentions, but in fact, he is probably about to ruin someone’s day. A person with a disability cannot be spotted in a crowd like a guy wearing a fluorescent ball cap. Some people with disabilities stand out because of a medical device like a walker, wheelchair, or oxygen mask. However, many have unseeable disabilities that need your support not your condemnation and criticism.

The ignorance of society and the way entitled people can treat others simply makes me sad. To all those who do not have enough in their lives, making them want to criticize others, I say STOP! Live your life to the fullest and let others do the same because what you think you see is not what you actually see. If your life is that empty, find a hobby and spend every bit of your time controlling every aspect of the said hobby. Most importantly, since you know nothing about strangers’ lives, allow them the peace to live their lives as well. Everyone should make this a topic of conversation with friends and family as the truth needs to be shared.

You may think you know, but you have no idea.

Read more of my MS mishaps by visiting www.myramblings.blog

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Janet Chojnacki – March 2021 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase, including highlighting one artist each month as our Artist of the Month. This month – our first month of the 2021-22 MS Art Showcase – we are proud to feature artist Janet Chojnacki of Wisconsin Rapids, WI:

Janet Chojnacki artwork entitled Lily Pad
“Lily Pad”

About the Artist:

“After my diagnosis, I needed to move back to the family homestead so I could be around people who loved me and could watch over me. This allowed me to create art in the room that my dad built for my mom, who was a fantastic painter. Without MS, I wouldn’t have this opportunity to spend my days doing what I love in a place that I love. Art is what fills my days, calms my soul and occupies my mind. MS took a lot from me, but it will not take this too.”

Read more and see additional works from this artist and others at mymsaa.org/artshowcase.

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