Multiple sclerosis (MS) is an unpredictable and often debilitating disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. according to the National Multiple Sclerosis Society (NMSS). The exact cause of MS is still unknown and symptoms vary greatly from one person to another, which can make it difficult for people who live with the disease to get others to understand what they’re going through.

The Mighty teamed up with NMSS to ask people who live with MS how they would describe it to others.

This is what they had to say:

1. “It’s like Christmas tree lights — when one light is damaged and goes out, depending on the type of lights, it can be just that one light that goes out and sometimes it’s the entire string that goes out. That’s what MS is like. When one nerve is damaged, sometimes it’s just that one issue, like tingling or numbness, sometimes you lose movement in that one part of your body and sometimes it’s your entire body that stops moving.” — Brenda Sandstrom Noland

"It's like Christmas tree lights -- when one light is damaged and goes out, depending on the type of lights, it can be just that one light that goes out and sometimes it's the entire string that goes out. That's what MS is like. When one nerve is damaged, sometimes it's just that one issue, like tingling or numbness, sometimes you lose movement in that one part of your body and sometimes it's your entire body that stops moving."

2. “A fatigue like no other and a feeling as if I’m wearing soaking wet knee socks, no shoes, and walking on cobblestones.” — Jan Garms

3. “We deal with pain all over the body and fatigue so bad it feels like you’re in quick-drying cement.” — Thomas Macdonald

"We deal with pain all over the body and fatigue so bad it feels like you're in quick-drying cement."

4. “Think of the most physically taxing thing you have ever done. Now imagine that you have to do that every waking moment of every single day, wearing a full suit of chain mail and your hands and feet are asleep. And those are the good days.” — Angela Wagg

5. Most people have a gallon of energy every day. I have a pint.” — Lucille Laflamme Wiemer

"Most people have a gallon of energy every day. I have a pint."

6. “Walking down the street is like trying to complete an army obstacle course while drunk, wearing shoes that don’t fit on the wrong feet with ankle weights and 3D glasses.” — Clairey Conlon

7. “[It’s] like wearing a tuxedo made of lead. Lead shoes and underwear, too, and a jaunty hat that weighs 40 pounds. Now, go dance like Fred Astaire!” — Jemiah Jefferson

"[It's] like wearing a tuxedo made of lead. Lead shoes and underwear, too, and a jaunty hat that weighs 40 pounds. Now, go dance like Fred Astaire!"

8. “I always compare MS to the extension cord that you plug into the wall to work a TV. The TV is your body, the cord represents the nerve transmitters and the outlet is your brain. A TV with a normal cord works fine. However, if a cord is partially cut, the TV no longer works like it used to. The ‘outlet,’ or brain works fine, but without the nerve transmitters (cord) completely intact, the TV will only work part of the time. Sometimes you can bend the cord just right and you can’t tell anything is wrong. However, if the cord is bent in a different way it causes the connectors to not match up right and the TV either partially works or doesn’t work at all.” — Lyndsay Llewellyn Baker

"I always compare MS to the extension cord that you plug into the wall to work a TV. The TV is your body, the cord represents the nerve transmitters and the outlet is your brain. A TV with a normal cord works fine. However, if a cord is partially cut, the TV no longer works like it used to. The 'outlet,' or brain works fine, but without the nerve transmitters (cord) completely intact, the TV will only work part of the time. Sometimes you can bend the cord just right and you can't tell anything is wrong. However, if the cord is bent in a different way it causes the connectors to not match up right and the TV either partially works or doesn't work at all."

9. “It is a surprise attack from your body that sometimes makes your eyes blurry, your feet not lift up, your legs cramp for no real reason, and it gives you a kind of hug no one ever wants to feel!” — Margaret Marcelak

"It is a surprise attack from your body that sometimes makes your eyes blurry, your feet not lift up, your legs cramp for no real reason, and it gives you a kind of hug no one ever wants to feel!"

10. “Every day is a challenge because of the uncertainty. MS is a lonely disease because it’s so hard to explain to people because so many of the symptoms are invisible.” — Rebecca Gibson Kimble

11. “You know that lamp that flickers and drives you crazy? Well that’s what I feel like all the time — like everything is short circuiting. [I] have to concentrate on walking without falling. Some days the pain is unbearable. [I’m] always exhausted even after a full night of sleep.” — LuAnn Ault Hawk

"You know that lamp that flickers and drives you crazy? Well that's what I feel like all the time -- like everything is short circuiting. [I] have to concentrate on walking without falling. Some days the pain is unbearable. [I'm] always exhausted even after a full night of sleep."

12. “Ever seen an electrician strip a wire? That’s what my immune system is doing to my entire nervous system, only it won’t stop there. It’ll get greedy and go for the raw nerves. This includes my brain, spinal cord and optic nerve, along with every nerve in my body. If this happens to a wire, conductivity is interrupted, lessened or lost, and it’s no different in the body. But unlike electrical work, with standards, MS is random and no two cases are alike.” — Kastie Pavlik

"Ever seen an electrician strip a wire? That's what my immune system is doing to my entire nervous system, only it won't stop there. It'll get greedy and go for the raw nerves. This includes my brain, spinal cord and optic nerve, along with every nerve in my body. If this happens to a wire, conductivity is interrupted, lessened or lost, and it's no different in the body. But unlike electrical work, with standards, MS is random and no two cases are alike."

13. “I just say I have relapsing-remitting multiple sclerosis, which means I have good days interspersed with bad days, and if I do or say things in an odd fashion, it is because the scars on my brain have damaged or altered the way I function.” — Megan Harding

14. “It’s like trying to have a modern car function normally with no insulation on the wires or any part of the electrical system.” — Robert Laibach

"It's like trying to have a modern car function normally with no insulation on the wires or any part of the electrical system."

15. “MS affects your mind, body, soul, career, family, spouse, children, parents and your friendships… You put on the game face and hope you can keep from showing the cracks in your armor for just another day.” — Ashley Poindexter-Tarmy

"MS affects your mind, body, soul, career, family, spouse, children, parents and your friendships... You put on the game face and hope you can keep from showing the cracks in your armor for just another day."

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According to her bio, Dr. Linda Chavers, is a writer, teacher and a scholar of 20th century American and African American literature with specializations in race and visual culture. Chavers recently wrote an article for Elle Magazine that discussed her problems with #BlackGirlMagic. This is my response to her article.

Dr. Linda Chavers,

I saw your piece at Elle Magazine. Did I think it was horrible? Yes.

But I’m not here to continue to drag you for it. Black Twitter already took care of that with #ChaversNextArticle. I am here to show you something you may not have thought about. I believe black women with disabilities have so much to celebrate using #BlackGirlMagic. 

When we discuss #BlackGirlMagic and even #BlackLivesMatter, we often forget about those with “invisible” diseases or disabilities. I’m here to shine some light on a much-needed conversation.

My mother was diagnosed with multiple sclerosis (MS) when I was a teenager. And it broke our family to pieces. My mom was the head of household, raising three kids alone on a medical assistant’s salary. For years she worked third-shift, walking the enormous lengths of a hospital.

When the MRI confirmed multiple lesions were on her brain and the many complications of MS were listed, doctors knew her job would be taxing on her health and suggested she find another career path. For a few years, my mom worked through the pain and kept her job, but eventually it became too much to bear. The job she was trained to do in the U.S. Air Force wasn’t a good fit. For a while, she stayed home, but soon she became bored.

I, my mother’s youngest child, was already a student living at home and commuting to my small, private university when my mom decided she should go back to school and earn a bachelor’s degree.

After going through the benefits of us being close so I could help monitor her illness, it was clear that perhaps she should enroll in the same school as me. We decided to commute together and sometimes even coordinated our schedules. We’d have lunch together and shared friends.   

During the three years we were classmates, we grew close but also competitive. She studied Sociology, and after bouncing around in a few majors, I finally decided to declare English as my major. We took several electives together and competed for A’s. It was fun to have her push me to do my best work and me doing the same thing for her, but then there were also the other times.

Times when she’d get a headache so bad, she could no longer stare at the computer screen. Other times, her fingers would go numb and present a tingling feeling, and I’d type her papers as she’d tell me her thoughts.

We made it through the toughest parts of college together, and it was a sight to see on our small campus. I became pregnant with my first child, which pushed my graduation date back a semester, and because of that, my mom and I ended up at the same ceremony to receive our bachelor’s degrees. 

I was definitely excited for myself because my son was born six months prior to me graduating, but moreover, for me, a little black girl from the Milwaukee, to watch my mother walk across the stage — unassisted by walker or wheelchair, hell yes, you better believe — was magic.

We stood in line together, tears welling up in both of our eyes, excitedly trying to find familiar faces in the auditorium. They called her name first. I stood behind her, anxiously waiting my turn, leading the crowd in grand applause. 

In the early years of my mom’s diagnosis, before hashtags, before Misty, before Viola, before Serena, I thought too that Black girls and women were just supposed to press on despite challenging circumstances without any type of recognition.

I admittedly didn’t understand all my mother sacrificed and dealt with — the stares in the parking lot because she doesn’t “look” disabled and her career as a medical assistant. 

Often my mom didn’t let us see the huge struggle it was for her to get out of the bed each morning with numb legs and a severe headache. She didn’t let us pick up the pieces of plates and glasses she’d drop on the kitchen floor, always sweeping them up before we ran in.

Dr. Chavers, all of my mom’s accomplishments are magical, and I believe you, my dear, have #BlackGirlMagic to give and spread around, too.

I believe loving and living with a person with such a debilitating disease like MS isn’t always easy, so I know having the disease can’t be easy. I want to share with you something I used to tell my mom on her most difficult days: “You have MS, but MS doesn’t have you.”

Throughout the years, I’ve seen my mom’s #BlackGirlMagic develop within herself, and she leaves it wherever she goes. Graduation day was proof of that. And since earning her degree, I’ve only seen her get stronger and thrive with MS. She’s found a great employment opportunity working with youth. Every day isn’t perfect, but I see that even with a disability, #BlackGirlMagic rings louder than ever. 

And you’ve got it, too. When I looked you up, I was surprised. I thought, “Wow, she’s so accomplished and living well with MS!” I encourage you to dig deep and stop downplaying yourself. Don’t internalize the fear that because your neurons don’t work like Serena Williams’ – that doesn’t mean that you aren’t or can’t celebrate you own unique #BlackGirlMagic qualities. That’s the beauty of #BlackGirlMagic, it can be whatever you want it to be, whenever you need a little boost to celebrate what makes you, you!

Mother and daughter in caps and gowns on graduation day
Raina and her mom on graduation day

I recently watched the movie “Still Alice.” For those who don’t know, it’s about a woman who develops early-onset familial Alzheimer’s disease. It’s the story of her decline, the struggles of her family and more importantly, the struggles she faces. In it she quotes Elizabeth Bishoponce, who said, “The art of losing isn’t hard to master: so many things seem filled with the intent to be lost that their loss is no disaster.”

She goes on to say that as a person with early-onset familial Alzheimer’s disease, she masters the art of losing every day. As a person living with multiple sclerosis, post-traumatic stress disorder, chronic infections, an unexpected death in the family and an amputation I, too, master the art of losing. Losing control of my body. Losing control of myself when flashbacks strike. Losing my big sister to brain cancer. And of course, losing my right leg.

In that same speech she says that for now, she’s still alive and has things she wants to do with her life. Though she has bad days, she also has times of complete happiness. She makes it clear that there’s a distinction between suffering and struggling, and that she is struggling to remain connected. She has learned to live in the moment and to master the art of losing. Her speech grabbed me and stuck with me.

The day I watched that movie I’d been in a bad place mentally and emotionally. I’d gone to my PTSD therapy session depressed, exhausted and feeling like I had nothing left. My therapist made me look at him and asked, “Are you saying goodbye?”

I’ll be perfectly honest that I’d gone into that session believing I would be saying goodbye. Instead, as he put a hand on my arm and looked me in the eye I realized I wasn’t quite as “done” as I thought I was. During that session I discovered that I still have the ability to make jokes (sometimes morbid ones in relation to my struggles). I still have the ability to smile and laugh. What makes me the person I am is still inside me. I’m still here. I’m still Meg.

I’ve changed. Who wouldn’t while facing the obstacles life has put in my path? I’m not the same person I was when this all began. I can’t be. I’m a new and different version of myself, but I’m still me. I walk on crutches or use a wheelchair now. I struggle with PTSD: the flashes of anger, reliving events as though they’re happening here and now, the anxiety, fear, hyper-vigilance, nightmares, times when I’m just numb, the intense and scary reactions to triggers. I struggle with having lost my sister to cancer and all the intense feelings connected to that. I miss her dearly and would give my other leg to have her back. I wear her thumbprint around my neck every day and find myself touching it and fiddling with it often because that talisman helps me feel her close to me. Her cancer and death was a fast-moving train that we never saw coming as we stood oblivious on the tracks.

She would implore me to continue the fight I’m in and remember to live in the moment. I think that she would be proud of me for so many things but definitely for learning to master the art of losing. With everything I’ve lost I’ve continued on and seen every event as a speed bump on my journey through life. She’d want me to continue to do that, so I will.

Many people would say I’ve lost more than any one person should have to endure. Many would say I have suffered more than any one person should. Perhaps they are right. However, those were the cards I was dealt. I can’t reshuffle the deck. Instead, like Alice, I will appreciate the moments of complete and overwhelming happiness and continue to struggle to remain connected to this world and to those who are important to me.

I’m a different version of the person everyone thought I’d become one day, but it doesn’t matter. What matters is that I’m still here, and I’m still me. I plan to continue not to allow my struggles to steal my essence. The journey through life can be tough, and events and people will no doubt change you.

Remember who you are and no matter what, remember that you’re still here. You’re still you. Just as I am still me.


Dear Teisha,

Last time I wrote you had come face to face with the aggressiveness of multiple sclerosis (MS). Your worst relapse ever. Numbness and paralysis catapulted you into a new world. For weeks you were confined to a hospital bed, not even able to wriggle your toes. During this time, you struggled with your new level of dependency and feared the implications impaired functioning would have on your future.

But as you slowly regained movement, you graduated to a wheelchair. And much to your surprise, your first feeling of sitting in a chair was that of relief. It gave you a new level of independence and enabled you to become more involved in your recovery. You were even energized by moving to rehab and channeled every ounce of energy into learning how to walk again.

And you did it! After weeks and weeks of effort, you celebrated taking your first steps. At the time, you were elated. Relieved that your legs could actually hold you upright and excited that returning to your life outside was now a possibility.

Yet here you are at hospital’s front door, and you are overcome by a sinking feeling. Peering through the glass window, life outside seems so fast-paced. It was a struggle making it from the ward to the front door, even with a walking aid. You wonder, “How will I cope out there with my legs?”

I have to be honest. The world isn’t too kind for those who struggle with mobility. The life you have created assumes independence and freedom of movement, from the apartment you live in, your workplace to the social activities you enjoy.

As always, you will rise to the challenge physically. Your unwavering focus and motivation that pushed you through rehab will guide you through the challenges on the outside.

But, unlike your experience in rehab, you will struggle emotionally on the outside. The reason why? Rehab was a cocoon. You became part of a hidden world. As life continued on the outside, you were surrounded by others facing their own struggles with injury, illness and disease. You were the norm.

As you go out these glass doors, you realize you’re now the exception. Everywhere you look, you will be surrounded by people functioning freely and walking seemingly without any thought or effort. And the more you watch others, the more agitated and upset you will become.

It is a constant reminder of what has been lost and the enormity of the challenge in front of you. You will keep asking yourself, “Why is life so hard?” It is exhausting just getting through a day. It doesn’t seem fair. You also become envious of others. Resentful that your life path is different to that of your family, friends and peers. Different to what you had imagined.

I wish I was there to say, “Snap out of it!” (I can get away with being a little harsh, sorry.) But what’s the point of filling your life with negative energy? It will not equip you to deal with the challenges MS will continue to present. And it will rob you of the ability to find joy and contentment in your everyday life.

As you re-enter life outside the cocoon of rehab and feel agitated about being different to those around you, I would encourage you to embrace being different. Don’t worry about the reactions of others.

Teisha Rose (Letter #3a)-001

Remember your first experience venturing out with a walking stick? You were self-conscious. Felt conspicuous. And then that man came up and asked, “Can you go any slower?” Mortified and embarrassed, you lost confidence to use your stick in public. Don’t let the reactions of others prevent you from living your life. Embrace your difference.

Embracing your difference will not only help you cope with the physical challenges ahead, but it will also create new life experiences. In other aspects of your life, you will start making decisions based on what feels right for your journey and your pursuit of good health. And you will be less concerned about what others think.

You know how conservative at heart you’ve always been. Guess what? You find the courage to break this mold. You will leave a secure corporate career, travel and live abroad and then retrain as a social worker. You will no longer live in the city. Instead, you’ll relocate to a seaside town and even write a book.

Each of these life choices were consciously made to encourage your well-being. You were not following expectations. Instead, you were actively participating in creating a life that was right for you. And the good news? Your health continues to benefit.

There is no denying that MS has made you different. But it is more than the obvious physical impairment and implications. You’re different because living with MS makes you more present in your life. You cease opportunities. You seek new perspectives. You learn from others. You dismantle constraint. You embrace difference.

In the future when you look at those walking without thought or effort, you will see this picture differently. Many are walking on a treadmill and living their life on automatic pilot. MS has made you different.

As you now walk out these doors, notice and celebrate the difference all around you. It will only enhance your life journey.

Follow this journey on Lives Interrupted.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


When it comes to living with a disease there are two kinds of scenarios that usually play out in public: 1) the person with the illness encounters a stranger who treats them with a random act of kindness that brightens their day or even their life and 2) the random stranger does something unkind that makes the sick person feel worse about their life, fueling their desire to go out and seek justice or simply hide in a hole. What happened to me was a whole other scenario.

In October 2007, I was diagnosed with multiple sclerosis (MS), an incurable and potentially disabling disease. To say I was devastated would be an understatement. To tell you that I spent months walled up in my apartment watching real-life medical dramas unfold on TLC while drifting in and out of a depression-filled slumber would be the absolute truth. By the time Christmas rolled around that year, I was ready for some normalcy, so I decided to throw a pre-holiday dinner for some friends. 

To prepare for the dinner, I went to Bay Cities Deli in Santa Monica, California, to pick up some of their famous bread and a few appetizers. I usually avoid this deli on weekends and during peak lunch hours, as the small parking lot only holds 20 or so cars and tends to turn into a madhouse. But it was late on a Friday afternoon, and I figured it wouldn’t be so bad. What I failed to take into account was the fact that this was the holiday season, and I probably wasn’t the only one hosting a festive dinner.

When I finally pulled off the street and into the lot, the parking attendant motioned for me to drive forward and wait for a spot ahead. I did as he said then patiently waited for my turn to park.

Unfortunately, the woman behind me missed the memo on patience and had it in her mind that this waiting thing was completely below her. She rolled down her window and screamed out, “What the hell are you doing? Move it!”

I looked back at her with a smile and politely motioned that I was waiting for the next spot to open. This was obviously not the kind of response she wanted from me, because she immediately swerved around to the side of my Jeep, hit the gas and started screaming obscenities at me as she raced into one of the two hidden spots behind the deli that had just opened and I had failed to notice.

“Are you an idiot? Why the hell would you wait there?!” she continued to scream as she got out of her parked car and I pulled into the other spot, which was right next to hers. I stayed inside my car and rolled down the window a few inches as she continued to tell me how ridiculous I was for waiting and how pissed she was that I had held her up. My only retort was, “It’s the holidays, be nice.”

She responded with another dirty look and screamed, “Bitch!” Then she slammed her car door and headed inside the store.

Before I could come up with a smart response, all the stress of the MS came crashing down around me. Pair that with the woman’s hostility, and my eyes burst into an immediate hailstorm of tears. My body began shaking, and I went into full uncontrollable sobbing mode.

After five minutes, I managed to calm myself down and pull it together to shop. Inside the deli, I grabbed a couple loaves of bread and some fancy cheese and was headed for the sandwich area when I spotted the lady from parking lot. She glared at me, and my hands immediately clenched. My bottom lip started to tremble.

Don’t cry. Don’t cry. I told myself over and over.

I couldn’t let this woman see me fall apart. I took my stuff and headed for the cash register. As I left the store, I thought I would break down again, but something strange happened. An extreme feeling of strength came over me.

After all the medical sh** I’d been dealing with, this lady’s rudeness didn’t even compare, so instead of getting into my car and racing out of the parking lot, I grabbed a scrap piece of paper from my backseat and started to write.

Dear Miss,

Next time you decide to use unkind words, please think twice and understand that you may not know someone’s life situation. I was recently diagnosed with MS and am still in shock from the news. Please know that while I held back my tears, I said a silent prayer wishing you and your family all the love and joy in the world during this holiday season!!!

I read it over several times to ensure the passive-aggressive message was clear, then I got out of my car, placed the note on the woman’s windshield and left the parking lot with my hands still shaking.

note left on car

It has been eight years since that day. I have been through countless MRIs and a variety of other tests, but the amount of damage MS has done to my body in that time is negligible. I consider myself lucky. But I still wonder what happened to the woman in the parking lot. I wonder how my words affected her, and I wonder if I may have been the unkind stranger.

If there is anything that living with MS has taught me, it’s that we are all fighting unseen battles. For all I know that woman could’ve just lost her mother, and I was on the receiving end of the hate she felt for the unfairness of death. I believe in the good in people, and I know I never would’ve written that note had I not been dealing with disease. Deep down I believe this woman didn’t mean to be unkind. I believe we only act out of malice or hate because our own lives are chaotic or broken. Adding to that pain by leaving my passive-aggressive note solved no one’s problems.

So here is my hope. I hope someway, somehow by the power of the Internet and social media, I can find this woman and give her a giant hug, because no matter how many words are exchanged, kind or unkind, at the end of day it’s our actions that make all the difference. And I want the chance to show her I’m sorry.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness during the holiday season, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.


Justine Van Den Borne, 41, was diagnosed with secondary-progressive multiple sclerosis at the age of 35, and though many of her symptoms aren’t yet visible, she knows that won’t always be the case. Unfortunately, Van Den Borne can’t explain this to everyone who sees her, and she’s been targeted a number of times for using handicapped parking spots near her home in Melbourne, Australia.

People with secondary-progressive multiple sclerosis (SPMS) experience symptoms such as fatigue, muscle stiffness, pain, difficulty with mobility, cognitive issues and bladder problems, according to the National Multiple Sclerosis Society. There’s no cure for the disease, and it’s progressive.

After shopping with her daughter at a local mall last week, Van Den Borne was upset to see someone left a nasty note on her windshield that read, “Did you forget your wheelchair???” Van Den Borne posted a photo of the note and wrote a lengthy post on Facebook in response. The post currently has over 25,000 likes on her page and has been shared nearly 5,000 times.

To person that left this on my car last week at Mitcham Shopping Centre- I was diagnosed with Multiple Sclerosis when I…

Posted by Justine Van Den Borne on Monday, November 9, 2015

“I am sick of people like yourself abusing me on my good days for using a facility I am entitled to,” Van Den Borne wrote. “A disability doesn’t always mean a person has to be wheelchair bound but lucky for you I one day will be… Before you ruin another persons (sic) day remember you don’t know everything and just because you can’t see it doesn’t mean a person isn’t struggling to put one foot in front of the other.”

“Because of my age, [people] look at me, and automatically presume I’m doing the wrong thing,” Van Den Borne told Australian news outlet The Age. “But actually I can’t carry my own shopping, can’t walk long distance, I have the bladder of an 80-year-old.”

Hopefully, her viral response will ensure incidents like this happen less frequently.

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