The Unspoken Symptoms

As we discuss various MS symptom challenges during this month’s MS Conversations blog, we wanted to talk about some symptoms that may be more challenging to disclose or discuss with others at times. This week we touched on the condition of PBA and its difficulties, but there are also issues with bladder, bowels, and sexual function that are some of the other more private, less disclosed symptoms experienced by those with MS. These symptoms can feel a bit embarrassing to talk about or discuss with others at times, and for this reason are sometimes the ‘silent’ symptoms one shies away from even discussing with his/her doctor. Even though silent, these symptom challenges can be loud in their presence for individuals.

Symptom issues with bladder can vary in MS. Because MS affects the nerve responses sent to the bladder that control sensations and contractions, symptom issues can include difficulties with emptying and storing, or both. There are several different medication treatments along with diet and fluid management planning that can assist with these symptoms. If you experience these issues, talking to your doctor about your symptoms can help to initiate some type of treatment plan to address these issues and help manage them. If your family and friends are not aware of this symptom and its relation to MS, this can possibly be an opportunity for them to learn more about the disease and its symptoms so they have a better understanding of what you’re experiencing. But remember, it is your body and the information you wish to disclose or not is your decision. However, when others are more educated and aware it helps to keep lines of communication open so that if needed, it may be easier to discuss the issues you’re facing with additional support.

Issues with bowel function in MS can be due to various causes as well, including lesion effects in the nervous system and medication side effects. Constipation and diarrhea are symptoms that can occur and be influenced by diet and medication practices. Discussing these symptoms with your doctor can help to form a plan of action to manage the challenges and decrease their effects. And again, while including those around you in your experiences can be difficult at times, it may increase understanding and communication when you want to reach out to talk about some of these more challenging symptoms.

Being a private and personal matter, sexual dysfunction symptoms in MS may not always be disclosed and talked about, even with one’s healthcare team. It can feel awkward at times to discuss such personal issues and the difficulties you may be having. Both men and women can experience these symptoms which can present in different ways; loss of libido, sensation and arousal changes, or even pain during intercourse can occur. Along with medication management for these symptom challenges, counseling can be another strategy used to discuss sexual issues being experienced. Communicating openly about the problems can increase cohesiveness and support amongst partners and allow for discussion of alternative sexual satisfaction practices. Education around the ways in which MS can affect sexual function and intimacy is an important piece and allows your partner to understand what you’re going through and how you can work together to manage it. That is why it’s important to try and include your healthcare team as well, to recognize and talk about the issues in order to find ways to manage the symptoms.

The symptoms that can occur with MS all have varying degrees of difficulty and challenge they bring to those affected. But it’s important to know that you are not alone in your experiences—others have faced similar obstacles and have also been reluctant at times to discuss symptoms. This is another element that MS unfortunately tries to impose on those affected—to intimidate or shame because of certain symptoms. But this elicits the moment and opportunity where individuals with MS can recognize their symptoms and discuss or disclose them as they wish—to educate others and increase awareness to bring MS out of the shadows and darkness and into the light.

What are some ways in which you’ve managed these unspoken symptoms of MS?

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Managing the Emotional Impacts of Challenging Symptoms

The first few years living with a diagnosis of multiple sclerosis (MS) are often described as a whirlwind. No one prepares for a chronic illness, especially one as unpredictable as MS. While you work closely with your neurologist and other specialty care physicians to manage the physical symptoms that may present, how do you manage the emotional impact that a chronic illness may put forward.

Symptoms such as Pseudobulbar Affect that are characterized by sudden, uncontrollable expressions of laughter or crying without an apparent trigger can be challenging to emotionally manage. These episodes often occur in public settings and can draw unwanted attention. It is important to remember that Pseudobulbar Affect is a symptom that is a direct result of a neurologic condition; it is not an indicator of a hidden or suppressed feeling. For some who experience this symptom, they question whether or not the inappropriate laughter or crying is an actual feeling that perhaps they were not aware of; this is not the case.

Embarrassing or troubling symptoms call in to question self-worth and can directly impact the way you feel about your MS. These feelings are normal and come along with the grieving process that is associated with chronic illness. Finding support through a friend or family member or even seeking the support of a mental health counselor can be beneficial. The following tips can also be of support during these emotional times:

  • Remain present: Harboring too much thought and attention to things in your past or in the future can cause unwanted stress and anxiety.
  • Value yourself based on your present abilities. Remain positive about what you can do now, versus what you could do before.
  • Put yourself first! Understand your needs and identify ways to meet those needs.

The MS Conversations blog is a support to the entire MS Community. Please use the comment section below to share your story, or to support to another individual with MS.

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Why Do I Cry or Laugh Inappropriately?

As MSAA continues to highlight important MS symptoms during MS Awareness month, this week, Pseudobulbar Affect Awareness Week (week of March 14, 2016), MSAA invites clients to learn about this lesser-known but very impactful symptom by watching a recently produced video featuring Daniel Kantor, MD.

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In this one-on-one interview, MS expert Dr. Daniel Kantor provides valuable insights into understanding PBA and its cause, the differences between PBA and depression and other mood disorders, guidance on discussing PBA with your doctor, and ways to evaluate and treat the condition.

More information, including a survey on PBA can be found at mymsaa.org/pba.

Share your symptom story in the comments below. How has PBA affected your life?

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Living With MS: One (Careful) Step at a Time

By: Jeri Burtchell

I remember my first relapse. Early in 1999 my legs had gradually gone numb from the bottoms of my feet up to my waist over a period of two weeks. By the time I decided it wasn’t just a pinched nerve or something else that would go away on its own, I could barely walk. Every step felt like I was waist-deep in quicksand trying to push my way forward and sinking fast.

That was 17 years ago, and all but a few of my subsequent relapses have also affected my legs. Before I began my current MS therapy in 2007, I would often spend some of my time in a wheelchair during the recovery phase of the more intense relapses.

Although I have only had two mild relapses in the past eight years, it doesn’t mean I am living symptom-free. My legs have betrayed me many times over the course of the years, and my face has become intimately familiar with all sorts of things one’s face shouldn’t see up close — asphalt, dirt, and even kitty litter on one occasion when I tripped and did a faceplant right in the cat box.

So when writing on the perils of walking, I draw from firsthand experience (much to my chagrin).

Besides legs that tire easily, I’ve also developed drop foot. Drop foot is like having your kickstand come down on your bike unexpectedly. You’re tooling along fine when your foot drops mid-stride and causes you to trip over your own two feet, like flying over your handlebars.

So I’m terrified of walking without holding someone’s arm or using a cane, rollator, grocery cart or assistive device — especially when I’m traveling. In my mind my wheels are constantly turning, assessing the terrain, the angle of incline. Judging the surface for the traction I’ll get in the type of shoes I’m wearing. It’s mentally exhausting. I literally cannot walk and chew gum if I want to be competent at either task.

The Doozie of All Faceplants

It was 2010 and my best friend Karen and I decided to take the kids to the county fair. She had her niece and nephew, and I had my youngest boy, Alix, with me. I was wearing sensible walking shoes and told all the kids I’d just watch them ride the rides so I wouldn’t get dizzy and fall. I thought I had covered all my MS safety angles.

It was the perfect day. Laughter and screams of delight filled the blue skies. We ate popcorn and cotton candy, and strolled around until the sun began to set. By that time the kids had ridden every ride except for the Zipper.

The Zipper was halfway across the fairgrounds and as we headed over there for the final ride of the day, I began digging in my purse for the rest of the tickets. With both hands occupied, my feet decided they’d had enough. My left foot dropped, scraping the asphalt pathway we were walking on and I was catapulted into the air.

I landed Tim Tebow style, on one knee for a brief second before launching face first into the pavement. I heard my sunglasses scrape the ground before flying off and skittering away. My initial reaction was “Crap! Those glasses were prescription!”, but I calmed when I remember they were just $5 drug store sunglasses. Then I could focus on what really mattered — the bloody egg-sized bump growing over my left eyebrow.

Alix and Karen came rushing to my side and helped me to a nearby bench, then ran to get some ice. I just kept asking for someone to call an ambulance. With the ice bag pressed firmly to my head, I leaned over my knees trying my best to ward off the nausea that was overcoming me.

Before long I heard a voice.

“Ma’am, can you stand up and get into the vehicle for me?”

I’m thinking to myself, “What kind of an EMT would ask me to do that without even a cursory exam?”

“Can you hear me, ma’am?”

Finally I take the ice from my forehead and look up to see it’s a clown with a big red nose and a huge upturned white grin who is asking me to step into a golf cart. I was certain I’d knocked my brain loose.

After several confusing moments while we discussed the lack of foresight or budget allocated to their first aid preparation, he convinced me an ambulance was waiting at the perimeter gate.

Karen followed behind with all the kids in tow as we rushed to the hospital.

They ran a battery of tests that included everything but shaking a Magic 8 Ball. In the end, all signs pointed to a concussion. I have never felt so sick in all my life. I had two black eyes and a huge knot on my head. When I saw the eye doctor a few days later, he speculated that my sunglasses saved me from breaking my orbital bones.

I managed to come away from that experience without any residual physical effects, but one thing is certain: I had developed a newfound fear of walking. I never leave town without my cane, and if I go to a store for a loaf of bread I’ll be pushing it around in a grocery cart. It’s not that I need an assistive device to be upright, I just can’t trust my feet.

I used to fear balance issues as my body’s greatest source of betrayal, but drop foot has taken its place. When I begin to tire or know I will have to walk for more than 25 feet unaided, I deliberately high step, figuring if I pick my legs way up in the air, my toes have less chance of tripping me up. While it might look silly, I believe it has saved me from kissing the concrete on numerous occasions.

If it gets worse I think I’ll look into a brace, but for now I’m taking MS one (careful) step at a time.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Just Take It One Step at a Time- Part 2

By: Amy McKay, M Ed, CSCS, CES

Revisit Part 1 of this two part series by Amy McKay, certified Strength and Conditioning Specialist providing “useful tips on how to improve each part of every step you take”.

FLEXIBILITY

Let’s face it, as we age our bodies lose their flexibility and elasticity. Before you know it, what used to just be a stretch, is now a strain! Flexibility is known as the quality of bending without breaking. As it pertains to walking, flexibility of the knees, ankles, feet, and toes is critical to a successful stride. Here are a few things to try to keep your feet feeling sweet.

  • Spread your toes out! Our toes were designed to move freely and independently. Purchase shoes that allow your toes to wiggle while they work. Choose footwear that has a sturdy sole and provides cushion and support while you walk. When you shop for shoes, shop late in the day. Our feet tend to swell up to a half size as the day goes on. And, walk around in the shoes in the store at least 10 minutes before you make your purchase.
  • Getting a proper pedicure is a necessity, not just a luxury. Proper care of your toenails and calluses is imperative. Overgrown or ingrown toenails, thick calluses, or blisters can make walking painful and very inefficient.
  • When it comes to your ankles, the best way to keep them mobile is to think about tapping your toes up and down, pointing and flexing your feet, and making imaginary circles in both directions. Having adequate ankle mobility will help prevent drop foot and ensure that the traveling foot lands right where you had planned.

TORSO STABILITY

Torso stability is a vital factor in taking a successful stroll. Without a stable torso, the low back carries more than its share of body weight causing pain and discomfort. Stability is defined as having the strength to stand or endure. Experiment with the following activities to add strength and stamina to your torso.

  • Do squats every day. Squats will strengthen all of the muscles surrounding the torso. The added torso strength will help the hip, knee, and ankle joints function more efficiently with each step. A squat is an exercise that can be modified to ANY fitness level. Simply start off by sitting down in a sturdy chair and then standing back up! Feel free to use the arms of the chair or push your hands against your thighs to help you. Repeat this 5 to 10 times in a row. Once you have successfully mastered that, try repeating the same thing without using your arms to do any of the heavy lifting! The next step would be to pretend like you are sitting in an “invisible chair” behind you. Begin your daily squat program by doing just 5 to 10 squats per day and progress from there. This movement is one of the most fundamental skills for the human body.
  • Practice perfect posture. We live a world that has us in a forward flexed position. Activities such as using your phone, tablet, computer, and even driving makeup a large portion of our day. The best way to counteract the forward flex position, is to realign your spine starting from the top. Use your “ESP” to coach yourself with these 3 quick verbal cues:
    1. Extend the crown of your head directly to the sky.
    2. Squeeze your shoulder blades together.
    3. Pretend like you are zipping a jacket up!

Tying it up…

So, whether you are stepping out on the town or still shuffling through the grocery store, building efficient walking patterns can allow your body to move more with less effort. These new ideas about the complex skill of walking may allow you to move throughout your day with less fatigue and more energy to do the things you enjoy. This could add to your overall quality of life and improve your life today. Keep learning and keep practicing these exercises. So, put a smile on your face and just take it one step at a time.

*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”

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Just Take It One Step at a Time- Part 1

By: Amy McKay, M Ed, CSCS, CES

When was the last time that you actually stopped and thought about the process of walking? Did you know that you could actually improve the efficiency and effectiveness of each step you take with a few simple changes? Put your best foot forward as we explore ways to create a great gait pattern.

Efficient walking starts with your brain. Begin to start thinking about walking. Walking is a complex motor skill. It involves balance, coordination, flexibility, and torso stability. As we stop and study each of these topics, I will provide a few useful tips on how to improve each part of every step you take.

BALANCE

Balance is a very important part of walking. With each step taken, there is a brief moment of balance on the foot that is in contact with the ground. Balance is a skill related component of fitness and can be improved with practice. Balance is defined as an even distribution of weight enabling someone or something to remain upright and steady. When balance skills are compromised, the typical compensation is to shuffle the feet, instead of actually placing one foot in front of the other.

Try adding this simple exercise to your daily life to improve your balance.

  • Practice standing on one foot while brushing your teeth, drying your hair, or working at your kitchen sink. The great thing about practicing this skill while in these locations is that you have the counter right in front of your to provide safety and support when needed. Simply start with 5 to 10 seconds at a time and build up from there. You will find that you are more successful on one side than the other, so be sure to practice BOTH sides.

COORDINATION

Are you one of those people that can walk and chew bubble gum at the same time? That seems to be our society’s check point for coordination. Coordination is defined as the organization of the different elements of a complex body or activity that enables them to work together effectively. Our bodies are complex machines that are made for movement. When they are properly tuned up, all of our daily activities, including walking, happen with less effort and more ease. Activities that cross the midline of the body have been shown to enhance coordination skills. Add these activities to daily routine.

  • Alternate reaching your right hand all the way across the left side of your body, then your left hand across right side. Repeat this movement 10-20 times each side per day. This not only enhances coordination, but also is great for the range of motion in your shoulders.
  • While standing with support nearby, alternate touching your right elbow to your left knee followed by your left elbow to your right knee. Start with just 3 or 4 repetitions on each side and then add more as you begin to feel stronger. This activity can help with your balance, coordination, and can provide stability and flexibility training for your spine.
  • Shake things up and take a dance class or just crank up your favorite tunes and move to the beat. Dancing is a great way to enhance your coordination, improve cognitive function, and is a FUN way to get some exercise!

Check back on Wednesday, March 9th for part 2 of Amy’s Just Take It One Step at a Time post.

*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”

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March 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

All-New Artists for MSAA’s 2016-2017 Art Showcase!

As part of MS Awareness Month, MSAA is very proud to present our 2016-2017 Art Showcase, celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you.

Please visit our online gallery to view all of the new submissions:

MSAA's 2016 Art Showcase MSAA's 2016 Four Seasons Art Showcase

As in the past, we will highlight one Artist of the Month throughout this year and share their artwork and their story.

Presenting MSAA’s Artist of the Month for March

MSAA is very excited to present the first Artist of the Month for our 2016 Art Showcase:

March Artist of the Month:
Ginny Townsend – Montgomery, AL
Field of Flowers
Field of Flowers by Ginny Townsend

About the Artist:
“Before I was a wife, mother, grandmother; before I had MS, I was ME! It took a decade for a diagnosis! What a relief to finally know!

In between exacerbations, I ignored “MS”. Maybe it would ignore me! Then 9-11 happened. On 9-12, I had a major exacerbation. I became permanently disabled. At first I was in a wheelchair. Now I use a cane and walker. I was bored so I began painting on mayonnaise jars! I also paint on canvas.”
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Heard about our 2016 Improving Lives Benefit and Online Auction yet?

Benefit_SliderOur Online Auction is Now Open!
Event attendance is not required for this special opportunity. Click the Online Auction link below to view the packages and register for bidding. More packages available soon.

Please note: online auction will close on Wednesday March 30, 2016 at 9:00 PM EST.

Live! Online Auction

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MSAA Celebrates MS Awareness Month

While every day here at MSAA we strive to improve lives today through vital services and support; March is a very important time of the year. MSAA is proud to launch the March is MS Awareness Month campaign. Throughout the month of March, MSAA will heighten awareness around MS symptom and relapse management, dedicating each week to a particular MS symptom or issue.

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Walking Awareness and MS (week of March 7th) – featuring comprehensive information on walking and MS with a newly developed awareness survey, a video provided by Acorda Therapeutics, blog posts by our guest bloggers, and social media posts. Content posted to www.mymsaa.org/walking.

Pseudobulbar Affect (PBA) Awareness (week of March 14th) – featuring MSAA’s new MSi video on PBA with Dr. Kantor, a patient-focused awareness survey, blog and social media posts. Content posted to www.mymsaa.org/pba.

MS Relapse Awareness (week of March 21st) in collaboration with the Multiple Sclerosis Foundation – featuring a newly developed Relapse Awareness Quiz, an updated version of our Understanding and Treating MS Relapses brochure, and blog and social media posts. Content posted to our MS Relapse Resource Center – www.relapses.mymsaa.org.

Have you visited our new website yet?

MSAA recently unveiled our newly redesigned website, MyMSAA.org. With a clean, mobile-friendly design, the new mymsaa.org features enhanced graphic images, links to important topics including MS Symptoms, Treatments, and information specifically for the Newly Diagnosed.

Check out all of the enhancements and features at mymsaa.org and let us know your thoughts!

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Breaking the Chain of Toxic Relationships with MS

By: Matt Cavallo 

I come from a large, close-knit Italian family that lives in a small town about eighteen miles south of Boston. When I was first being diagnosed with MS, my little brother was on a downward spiral into the world of drug addiction. He is only eighteen months younger than me and as a result we have a lot of common friends. During this time, my friends were telling me about his erratic behavior that was putting himself and others in danger. I decided, as the big brother, that I needed to talk to my parents about his condition and as a family we needed to intervene.

The reaction I got from my family was unpredictable. My entire family turned on me. My mom and dad told family, friends, as well as, people at church and at the country club what a horrible person I was. They were spreading lies about me which was turning people in the community against me. My mother eventually wrote a letter to me disowning me from the family.

My family’s public smear campaign deeply impacted me. The stress of being disowned was exacerbating my MS symptoms. In a small town, gossip travels fast. I was uncomfortable going to public places in my hometown because of the stares and judgment that I felt when I ran into former family friends. The problem still remained that my brother’s addiction was progressing and no one was doing anything to stop it. Rather, they were doing everything to enable it.

As my family relationships deteriorated, the tolls on my health were evident. Even though I loved my family enough to tell the truth about my brother, it was apparent that my decision to do so cost me most of my life-long relationships that I had in my hometown. The only way I was going to be able to stop the stress that was killing me was to eliminate these toxic relationships. I had to come to terms with the fact that I had done all that I could do and that their reaction wasn’t about me, rather it was their denial about my brother.

With my family bonds destroyed, so were my ties to my hometown. Jocelyn and I decided to move back to Arizona, where we met during our college years. About that time, my brother’s drug problem had boiled to the surface. He was now an intravenous drug user entering rehab. It was at this time that my mother realized what she had done.

Right before we left for Arizona, she came and apologized. After that, my dad came and apologized, as well. They both claimed that they didn’t know how bad it had gotten with my brother and that they were in denial. They said that they didn’t mean to destroy their relationship with me and pleaded for me to let them back into their lives. I forgave them and let them back into my life and let them establish a relationship with our children.

The broken chains of our family would not be fixed overnight. My brother’s heroin addiction has now taken an emotional and financial toll on my parents. My brother also contracted Hepatitis from sharing dirty needles. During one of his rehab stints in Arizona, he apologized to me for everything that the family did to me in order to protect him. He was broken hearted that I had been cast aside for trying to stop him from destroying his life. He said that I was the only one who ever tried to help him before it was too late.

Working on these toxic relationships has reduced my overall stress level and has been beneficial to my health. While it was hard to cut the ties, the decision to do so has put me in a better place overall. In my case the old adage was true. I loved them so I let them go and the ones who truly loved me returned. The ones who didn’t are no longer a part of my life. As a result, my life is happier, healthier with a greater sense of self-worth than when I was fostering those toxic relationships.

This was adapted from a passage in my second book, 7 Steps to Living Well with a Chronic Illness. It is accompanied by a Toxic Relationship Exercise and strategies for how to reevaluate toxic relationships in your life. If you are interested in my brother’s story you can learn more on my blog.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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The Invisibility of Disability

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Communicating the full impact of MS to friends and family is a daunting, and often frustrating, task. Looking fine and being fine are two very, very different things.  This concept rang especially true for our phenomenal contributor, Matt, so he wrote an amazing article titled “Please, Tell Me Again How I’m NOT Disabled”

Our community completely agreed and responded with abundant feedback. Here are just some of the frustrating experiences encountered by our MS community:

No, you don’t “understand”

  • I get easily frustrated when a close friend or a direct family member would say they understood, and then get mad or angry when I’m having a relapse.
  • I’m in the painful process of a relapse and my family doesn’t understand the facts of any of this. Especially the fact that NO ONE is more frustrated than I am.
  • If you don’t understand, at least be human and try. That’s all we ask.
  • Sometimes I want to scream, “Stop telling me you understand when you have no idea!” 

I might look fine, but I’m not

  • I look normal but feel destroyed inside.
  • When people tell me I look fine I just respond with “that’s because I don’t wear my brain and spinal cord on the outside.”
  • Had to “talk” to my relatives to tell them that just because you look normal doesnt mean you feel normal.
  • I just hate the “you look good” comment. What should I look like?

I’m not lazy!

  • When your support system doesn’t ‘get it’ and accuses you of laziness, it is infuriating. I hate not being understood.
  • I tell myself how pathetic and lazy I am. I don’t need to hear it from everyone else.
  • I can’t live up to your expectations. I can’t even live up to mine, and it’s so frustrating.
  • It’s amazing to me that people with MS have to fight so hard to “prove” just how disabling it can be

How about you? How has your experience been communicating to friends and family about your MS?

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