Prioritizing Self-Care

Each year I approach the holiday season with excitedly high hopes and an underlying worry for the demands the season entails. I know I need to be even more attentive to my health than usual to best navigate the next couple months. Yet most years I put commitments and other people ahead of my own needs. It leads to overwhelm and exacerbates my MS fatigue. 

Self-care is an individual decision and responsibility, and it’s within our control.  So, what makes it so hard? Often, it’s the abundant needs of family, friends, profession, and self-imposed expectations competing with limited time, money and energy to meet those needs. The demands of us and by us can be more than humanly possible to meet. So where do we draw the line? 

It feels like the time or effort needed to take care of ourselves means we need to fail something or someone. Deciding to take care of ourselves at the cost to someone else feels selfish.  Yet we don’t live in a vacuum, and our actions or inactions affect others. External support is a reasonable need to grant ourselves permission to do what’s good for us.

Most of the time, I’m the harshest critic of my decisions and the most demanding of what needs to be done. No one else is usually complaining.  I’m comparing myself to a fictional ideal that might not be possible for anyone, even if they’re in perfect health.

I’m reminded of the scene from the 1996 movie Jerry Maguire where sports agent Jerry (Tom Cruise) begs athlete Rod Tidwell (Cuba Gooding Jr) repeatedly to, “Help me help you,” in hopes of helping them both.  

I hadn’t remembered the rest of the scene. Rod laughs at and mocks Jerry until Jerry walks out frustrated.  Rod calls out after Jerry, “You see, that’s the difference between us.  You think we’re fighting, and I think we’re finally talking.”

I like that shift in approach.  When I notice feeling unnerved, unsettled or stressed, what’s going on? Do I identify and heed my needs, or do I push through? Am I fighting myself, or am I finally talking to myself?

Once I stop fighting myself and acknowledge I need to make a change, looking at my situation and needs as if it were a loved one’s experience helps me gain perspective.  I imagine a loved one coming to me for advice. They perfectly describe living with my situation, challenges and needs, and they ask what they should do. What would I suggest? 

If they respond as I would, they resist my logical and obvious recommendations. They explain all the reasons why they can’t do what I think they should do. And the problem remains. 

When I’m honest with myself about why I’m resisting, it’s embarrassing how stubborn and illogical I’m being under the guise of strength and responsibility. I know what I need, and there is a way out of it that doesn’t demand I be a martyr.  The answer for what I should do isn’t complicated or a mystery.

With the holiday season upon us, this year I’m committing to a few specific actions to combat overload:

1. Check in with myself daily, and honestly assess how I’m doing.
2. Do something each day that I’d qualify as self-care. If I’m resisting doing what I know would be best for my needs, it warrants self-examination.  
• Who or what is stopping me? 
• Why is it a problem at all?
• Is the stress worth the reward?
• What is the cost of ignoring my needs? 
3. Share my plan and ask for support from trusted confidantes.  Let them know when I’m feeling conflicted. 
4. Give myself permission to put my needs first, and support others in doing the same.

Whether large or small, stress and burdens carried alone are brutally difficult. They become manageable when shared. If we mutually work toward helping others help us, we’ll all be better off. 

Post Script If you’re interested in watching the scene described and not opposed to nudity, here’s a link: Jerry Maguire: Help Me Help You 🏈 (MOVIE SCENE) | With Captions 

Lifelong Learning

When the kids return to school, traffic patterns change and I may follow the school bus on my morning commute to work.  There are fewer tourists in my town and fewer colleagues away on vacation. Stores and ad campaigns feature school supplies and products useful for students going back to school. “Back to School” season is a terrific annual reminder that learning doesn’t end after finishing school. I consider how much lifelong learning I’ve done and hope to attempt, the possibilities grow, and I’m motivated to plan more. 

A lot of learning comes naturally.  Something breaks, and I search online for a video on how to fix it. A health issue flares up, and I search for information on causes, symptoms, and treatments. Books and documentaries are suggested, and I’m intrigued enough to check them out. A social media feed pops up with something that teaches me something I didn’t know.  This can be a lot of learning, and it can be enough.

Life circumstances often compete with life goals, and they can hold us back from dreaming big. Multiple Sclerosis affects my health and beliefs about what’s possible for me, and so does aging, work, responsibilities, and finances. Mini doses of learning keep things interesting, and they can remind us of the possibilities.   

What excites me? What’s holding me back? How may I learn more about it?  

Options for learning abound. Consider local or virtual workshops, classes, and training. Conversations with friends and internet searches can lead to fantastic opportunities.  Dream big and work backward for what steps can lead there. Small steps today can change the trajectory of life and lead to big achievements later.  

Learning, growing, connecting, and contributing are tremendous activities for fulfillment. Being able to do some things may not be possible as we envision them, yet learning about them can broaden our perspective on how we could incorporate them into our lives. Ultimately, learning is not about the information, it’s about how it changes us. It changes how we perceive, understand, and interact in life. The possibilities alone are exciting! 

Traveling With Health Issues

My definition of travel has changed as my Multiple Sclerosis symptoms have progressed. Travel used to be trips that include overnight travel, and even one night away from home might not have qualified as “real” travel. Now travel includes going places for periods of time that disrupt my daily routines, and that means day trips solidly qualify. Travel includes going anywhere outside of my normal routine. It demands having health issues considered and accommodated to ensure I have fun, meet my body’s needs, and don’t stress too much.

Two adages help me plan for travel:

“If anything can go wrong, it will (and at the worst possible moment).” 

~Murphy’s First Law

and

“Wherever you go, there you are.” 

~Oliver’s Law of Location 

I see Murphy’s law as a comical yet accurate warning, not pessimism. Things rarely go exactly as planned.  It takes foresight, preparation and back up plans to help navigate glitches with less stress. I see Oliver’s Law of Location as a fact with corresponding guidance to bring what I need. If I don’t plan ahead, the routines and things that keep me well in daily life might not be wherever I am.

Historically, I’ve prepared for trips by detailing a fairly straightforward packing list of clothing, toiletries, documents, electronics and medications. I’d consider how many articles of clothing and footwear to bring, match apparel to the weather and planned activities, and bring travel sized grooming products.

What would get missed were the things I use off and on to manage MS symptoms.  Traveling always causes one or more of my MS symptoms to exacerbate, and I wasn’t always prepared with food, products and equipment I have throughout my home that help me keep symptoms in check.  

It’s easier at home to accommodate my needs and preferences. It flows, because I’ve spent a lot of time creating routines that work for me. At home, I have bananas in the kitchen, muscle tonic in the fridge, a yoga mat in the living room, supplements and medication in the medicine cabinet, and magnesium sprays, CBD lotions and body washes in the bathroom. Everything is where I need it. 

Planning trips and leaving a normal routine takes effort, and it takes even more preparation and organization with health issues to address. What really helps me prepare for travel is looking at what makes me anxious or unsettled and addressing them one by one.  

Questions: What do I worry about, and what stresses me out?

Answer: I worry that I won’t have what I need to do impromptu activities. I worry about being able to keep up with others and the itinerary. I worry about not having freedom to deviate from the schedule or get rest when I need it. I worry about symptoms getting out of check and not having the products I have at home to address them.  

My worries stem from my common and persistent MS symptoms of spasticity, constipation, and fatigue. Recognizing this and planning ahead helps reduce my anxiety about managing them away from home. 

Spasticity is the term for when the nervous system misfires signals to limbs causing spasms, tightness, achiness, and cramping. Spasticity causes pain, and I combine a lot of methods in daily life to keep it in check. Spasticity makes flying and driving long distances endurance events.  While these activities are not technically endurance sports, I contend MS makes them qualify. I’m pushing myself to stay in confined spaces and positions that cause pain and muscle spasms. 

It requires diligence with supplements, lotions, stretching, and hydration. I’ll increase my medication dosage for the day and stretch at every opportunity. I’ll do full body stretches at rest stops and in airport terminals. Stretching in a car or airplane seat is more difficult but not impossible. In confined spaces, I can massage my calves and forearms, point and flex my toes to stretch my calves, and do wrist and hand stretches to relieve pain in my forearms. I don’t like drawing attention to myself, and I try to be discreet.  That said, I think it helps remind others to tend to their own bodies.  I’ve noticed others in airport terminals waiting for a flight notice me, get up from their seats and do their own stretches.

Constipation is deemed to be embarrassing and a personal issue.  Let’s remember it’s a human issue, and lots of people with or without health issues experience it at one time or another. The more informed we are, the better able we are to treat it. When MS damages the central nervous system, it can cause bowel and bladder issues.  Stress, dehydration, and changes in diet and routine can all contribute to constipation. Travel often includes all of these things. 

Anticipating, monitoring and treating constipation early can really make a difference. Fruits and vegetables (with high marks for bananas and pears), magnesium supplements, stretching (torso twist is great), and staying hydrated help me a lot.  

Fatigue is a common MS symptom, and it challenges me in the best of circumstances. Travel typically increases exertion, engagement, decisions to make, and overall stress level. Building in rest breaks, hydrating, keeping up on medications and supplements, and including fitness activities help manage it as best as possible.  

I wish I was low maintenance, and I strive to keep vanity in check, but MS has made me high-maintenance. I console myself with saying that at least I’m doing the maintenance and not pushing it on other people. I get exhausted thinking about everything I do to address my MS and general health, and I don’t even do all I feel I should. Periodically, I remember that even if I can do it all, I don’t need to do it all alone. I can ask for things that will make my life easier.  People are highly receptive and willing to help. They’ll stock bananas so they’re ready for me. They’ll go for walks with me or make sure the schedule allows time for movement.  They don’t make me uncomfortable or act judgmental. They’ll ask if I need anything, help me, and provide gentle reminders to tend to my needs. 

I enjoy travel immensely, and I endure what it takes to make it happen. Travel will cause MS symptoms to rear up, and it is hard on my body. I’m able to travel, I enjoy it, and I know it makes my life better. I do what I can to minimize the challenges and accept the hassle, because I still can and it’s still worth it.

Summer Heat and Changing Goals

Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish?  When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?

Each season or time of year has a different set of inherent challenges that aging and Multiple Sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges. 

Summer brings nice weather that I look forward to and also dread. Summers spent chasing the sun and building a dark tan no longer appeal to me. Basking in the sun feels good for moments and not hours. Staying cool and protecting myself from the sun and heat have become the objective. I look back at photographs from gatherings in 90-degree weather, and I can clearly see how I’m fatigued and not thriving. My smile tries to mask the internal suffering I’m experiencing. When overheating wasn’t an issue for me, I didn’t understand why it was so troublesome for others. Now I get it.

With time and more experience with how MS affects my body, I can anticipate how heat will trigger symptoms that are pseudo exacerbations. It helps to recognize them as temporary, because anxiety and stress can raise body temperature and worsen the experience. Thankfully,  am now less fearful of the loss of feeling in my limbs and the debilitating fatigue that comes on. I am more interested in being proactive about planning for comfort and enjoyment. While pseudo exacerbation symptoms are temporary and not disease progression, they still aren’t fun and are worth trying to avoid. Symptoms are uncomfortable, physically and emotionally painful, and frustrating.

Solutions are highly individual. It’s all about setting myself up for success before it gets to be a problem. Because it’s not a gradual process of my internal body temperature getting warmer, planning ahead is crucial. It increases exponentially and is often too much before I can gracefully exit social interactions. I can go from feeling slightly uncomfortable to not okay and needing immediate change in a moment. It’s similar to hot flashes associated with menopause, but for me it differs for the duration and lingering symptoms. Fatigue hits hard and lasts. If I wait until I’m overheating to come up with a plan, it’s often too late. I’m not in my best decision-making mind at that point. Having options and pre-planned back up plans make it less stressful considering options, accommodating my needs and maintaining polite demeanor. 

Planned events require me to adjust to the environment and navigate social norms. How can I dress, use cooling accessories, influence the location to be in the shade, or limit time where I’ll be in direct sun? Can I do anything to reduce the potential that I’ll be at the mercy of temperatures that trigger my MS symptoms? Can I anticipate challenges and make sure people know I may need to move locations or leave early? Advance notice can help reduce the potential for surprising or offending people. 

Unscheduled days allow me to adjust my plans to my body’s needs and limitations. Do I have the flexibility to design my day to best accommodate my wishes and environmental circumstances? Can I reschedule some activities to another day? Will the weather be different tomorrow, later this week or next? Can I do things early morning or late evening when it’s naturally cooler? The bonus of choosing non-peak times for activities is there aren’t as many crowds. It can be more peaceful and less chaotic. The potential for sunburn is minimized, and I can rest mid-day without feeling lazy. Knowing I already went outside or will go out later in the day allows me let go of the feeling that I’m missing out.

I look forward to sunny, warm days, but I’ve come to relish overcast weather, light rain and breezes. They allow me to enjoy being outside without conscious planning to avoid triggering my MS symptoms. Ideal weather depends on my goals and how my body feels, and it changes moment to moment, day to day, and year to year. Trying to force my body to behave like it did when I didn’t have MS is a futile and frustrating endeavor. Aligning my plans and outdoor activities with my body’s needs leads to less stress and more fulfillment. While I have resistance to being a bother, usually someone else will express gratitude when I speak up. My issue may be medical, but the desire for comfort is universal.  

This summer, my goals are to design my schedule to align activities I want to do with the weather and my body’s preferences, be kind to myself, advocate for my needs, and enjoy all I can still do.  

Intentional Motivation

It’s hard to stay motivated to do everything that I think I should do to be healthy and live well with Multiple Sclerosis. It seems like the hope of living with fewer MS symptoms and potentially less disease progression should be enough motivation, but temptation, fatigue and a bit of resentment that I even have to deal with MS demotivate me. 

Demotivation can also come from unlikely sources. A few years ago, I saw a physical therapist for hip pain. I described my fitness routines that I’d done for years. It included a daily minimum stretching and activity quota, and I was proud of myself for always doing it. I was very flexible and fairly strong. My habits supported my fitness level. 

Accurately, the physical therapist told me I had plateaued with my exercises. I needed to do more strength training to address the hip pain and improve my fitness level.  I did the prescribed exercises until the pain subsided, but it was tough doing everything they suggested. I was discouraged that I wasn’t doing it all. Not only did I stop doing the prescribed exercises, I stopped doing my minimum daily fitness regimen.  

I took good information, and I mentally warped it into nonsense.  Because my previous minimum daily routines weren’t enough, I concluded they weren't worth doing. I justified that I was still active and exercising, I just wasn’t doing it every day.  

Put in writing, it’s obviously flawed and unhelpful logic. In my mind, it made sense.  In reality, I squandered good habits that were helping me.  After a few years without daily stretching, my flexibility and strength diminished. Things that used to be easy are painful. I recently reintroduced my daily minimum regimen as mandatory, and I’m seeing improvement. My flexibility and strength are increasing, and movements are less painful.  

Reflecting on this experience inspires me to be more intentional about what motivates me and what discourages me.  

Motivation that comes from excitement works better than fear.  I have more success working toward goals than trying to avoid potential consequences. I want to feel like I’m being rewarded, not punished. 

My resentful and fearful thought process is that I have to exercise so that I maintain my mobility as best as possible, because I have a sucky disease that mostly targets my spine and affects my legs and arms. If I don’t keep moving, I won’t be able to keep moving. 

My enthusiastic thought process is that I get to exercise and live in a body that can do things I enjoy. The better I treat my body, the better I’ll feel, the more I’ll be able to do, and the better odds I’ll have aging with MS. If I keep moving, I’m more likely to be able to keep moving. 

Both approaches are true, and both work. When my resentful mindset kicks in, I hope to notice it and not give up.  I want to remember how much my body has done for me and continues to do for me, and set a goal that excites me.  It doesn’t have to be a big goal, it just needs to be meaningful and encouraging. When motivation comes from an enthusiastic mindset, I’m eager to do what’s good for me, and I'm happier overall. It’s a win-win!

Multiple Sclerosis Generations: From Diagnose & Adios to DMT to Crowdsource

Generations offer connection with those before us, with us and after us.

When age groups are categorized by generations, it’s interesting to see how birth year and world events influence life circumstances and outlooks. In the United States of America, the generally accepted generations include the Lost Generation, the Greatest Generation, the Silent Generation, the Baby Boomer Generation, Generation X, Millennials, Generation Z and Gen Alpha.  It occurred to me that people with Multiple Sclerosis could also be considered as living in other various generations depending on how old we were at first symptoms and diagnosis, the year we were diagnosed, and the understanding of MS and available treatments during early adulthood.  

I look at these differences and similarities not to segregate us, but to assess my own health, see where it can help me with my own journey, and consider how I can pay it forward for others. I see people older and diagnosed before me as farther along the MS path. I might not follow the same path, and I likely have more health care options than they had.  That said, I can see where their path seemingly led and learn from them.

I created the chart below that aligns the standard generations with three pivotal advancements in MS diagnosis, treatment and patient connection. Please don’t tune out yet, I promise to explain what it meant for me. By looking at the orange No or green Yes, it shows whether people in that generation had certain advancements available to them at age 20.  I chose age 20 to reflect when symptoms may have been present. While everyone is unique and experiences MS differently, it was a reasonable age for this purpose. 

There are many interesting MS facts in the Timeline – The History of Multiple Sclerosis. The three years and corresponding advancements I chose to include are:

• 1981, the year MRI scans became a tool to view images of MS lesions, 
• 1993 when the first MS disease-modifying therapy (DMT) was approved for use, and 
• 2010 when Facebook established the option to create groups and online support communities became more commonly accessible.   

The Lost, Greatest and Silent Generations had none of the three advancements available to them when they were 20 years old.  Likely they lived in the “diagnose and adios” days when doctors might have known they had MS and told them, but they didn’t have any treatments to help them manage their MS.   Whether adios referred to goodbye or “to God” (as in you’re in God’s hands and there’s nothing they can do) is semantics. Either way, you’re on your own, and the doctor has done what they can.  Even worse were those not told they had MS, because some doctors believed a patient knowing they had an incurable disease was worse than not knowing. 

The Lost and Greatest Generations could be thought of as the “Diagnose & Adios Generation” or just the “Adios Generation” if not told they had MS. The youngest of these two generations would have been nearing 60 by the time MRIs were available to identify their lesion locations, and perhaps some of them benefited from that technology.  

I have and have had friends in the Silent Generation age group who lived with MS for many years and experienced disability by the time they were in their 50s and DMTs became available. They told me of participating in the lottery for early DMTs.  It wasn’t until I did research that I more fully understood what that meant.  

I’d known about the ABC drugs, and here’s an overview for those who might not. The three ABC drugs (Avonex®, Betaseron®, and Copaxone®) were approved between 1993-1996.  They were the first medications to help reduce the frequency and number of exacerbations a person with MS has, thereby delaying disease progression for those able to access the medication and for whom they helped.  

The first disease modifying medication was approved in 1993, and there wasn’t enough supply for all who wanted it. An article from the New York Times described the situation.  

“A computer lottery will be used to distribute a limited supply of a newly approved drug for multiple sclerosis, angering and saddening patients who might be helped by the therapy.  

“The arrangement may leave four out of five of the eligible sufferers unable to obtain treatment when the drug goes on the market in October. Doctors and ethicists called that a reasonable compromise.”

My friend was one of the lucky ones to be selected in the lottery. She began Betaseron® treatment and had positive results.  Currently 81 years old, she is of the Silent Generation. Timing for the medication’s availability benefited her and many others, and the subsequent approval of Copaxone® in 1995 and Avonex® in 1996 changed the disease course and prognosis for generations of people with MS to come. She and her peers could be thought of as the first of the “DMT Generation.” 

From MSAA’s page “Who Gets Multiple Sclerosis,” “Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS.” It’s possible people in the Baby Boomer Generation may have had DMDs available at diagnosis. Those in Generation X are more likely to have had ABC medications available at time of diagnosis than any generation prior.   Please note that by saying these medications were available, I’m not saying people with MS had insurance, could afford medications, their doctor prescribed them or they chose to take them. Issues surrounding access, affordability and effectiveness are a huge conversation beyond what I’ll mention in this post. 

Millennials are more likely to only know a time when DMDs were available, and Generation Z were born into a world with DMD existence.   

I was diagnosed with MS in 2008, and at that time the prevalence of online patient communities was scarce. Patients Like Me originally started for patients with ALS in 2004, and they added a group for people with Multiple Sclerosis in 2007. I found them in 2010, and it was a terrific venue for learning, interacting and not feeling alone. Facebook groups started in 2010, and since then many groups with a myriad of MS interests have been created. I’ve found them helpful as they increase opportunities for connection, information and mutual support.  

I used to look to my elders for insight.  Then I added peers similar in age to those I sought advice and support. Now I look to the youth as well. It seems to me it can be thought of as a “Crowdsource Generation,” where we share information, learn from each other, support and apply what make sense for us.  

I look forward to ongoing medical advancements to see what the next MS Generation might be. Hopefully someday there will be a “Cured of MS Generation” and ultimately a “Post MS Eradication Generation.” I have hope.

References:

“Multiple Sclerosis Drug to Be Dispensed by Lottery” The New York Times, September 2, 1993, Section A, Page 15, https://www.nytimes.com/1993/09/02/us/multiple-sclerosis-drug-to-be-dispensed-by-lottery.html 

“Who Gets Multiple Sclerosis.” mymsaa.org, May 31, 2022, https://mymsaa.org/ms-information/overview/who-gets-ms/ 

“PatientsLikeMe Update: May 2007.” Blog.patientslikeme.com, May 2007, https://blog.patientslikeme.com/health-conditions/als/patientslikeme-update-may-2007/ 

“Timeline – The History of Multiple Sclerosis.” mymsaa.org, Feb 18, 2016, https://mymsaa.org/publications/motivator/summer-fall12/cover-story/timeline

“A Brief History of Facebook, Its Major Milestones” by Christopher McFadden, Interesting Engineering, July 7, 2020, https://interestingengineering.com/culture/history-of-facebook 

Cultivating Kinship On Social Media

An estimated 2.8 million people worldwide are living with Multiple Sclerosis, and some choose to use social media.  They share their experiences, and they allow us to see their vulnerability for the betterment of all. Social media can be cold and hurtful, yet it can bring us community and kinship. It’s an individual decision to participate or avoid it.  It’s scary and risky to put ourselves out there, and we need to support those who are willing to share.  

 

I’m grateful for individuals living and speaking their truth.  Some have been sharing for decades, and some are just starting. I’m heartened by commenters who support with compassion and scroll past when things don’t speak to them.  I’m inspired by so many who cheerlead and model respectful interactions with exceedingly tough topics. I hope we can hang on to the benefits of social media and lose the hurt it can cause.  We need to protect our vulnerable peers, and I hope we can do this with compassion.  We are better for the myriad of voices and experiences. Suffering alone is misery. Knowing we aren’t alone helps us get through the tough stuff. 

 

It’s tough with any community where individuals are going through a lot personally.  Some people deal with it by lashing out or blaming.  It can be hurtful even when unintentional. I can give lots of examples I’ve experienced and seen, but I’ll share one of my earlier experiences that I think shows how people who understand MS can feel anger toward people who are doing their best.  

 

Years ago, I agreed to be interviewed for the local newspaper.  The article focused on how I have MS, am open with my health and was doing well professionally. The headline said I wasn’t going to let MS stop me. A comment on the article said I was doing a disservice to all people in the MS Community. She explained her husband had MS and continued working long after he should have left the workforce. It caused her a lot of stress and frustration, because he wasn’t accepting his limitations.  That comment stung.  I hadn’t written the story. I was interviewed, the reporter interpreted what I said, and they presented it in a way that was intended to be complimentary.  I don’t fault them for that.  That said, I didn’t say MS wouldn’t stop me, and it took much more time and brain space than I’d like to admit to accept her comment wasn’t about me. I felt compassion for her situation, but it hurt having her anger directed at me.

 

At some point the newspaper removed the comment.  I’m not sure if it was a broad-brush removal of comments on old stories or specific to this comment, but I appreciate that it isn’t there anymore. 

 

This experience helped me to shift how I look at social media interactions. When receiving comments, I consider the following:

• Are they disruptors pushing an agenda or are they genuinely trying to learn?
• Can I show compassion for them while maintaining my own wellbeing?
• What can I learn from them?
• Is the comment about me or them?
• Does the comment warrant a response? 
• Sometimes a lack of a response is more effective than engaging. 
• Remember comments can be deleted on some platforms.

When commenting on other people’s posts, I consider these questions and perspectives:

• Does it apply to me?  Do I have anything useful to provide? 
• Why do I feel compelled to react or comment? Am I being supportive?
• Is my response about me or about their experience?
• Am I staying on point for what they posted, and is it helpful? 
• Remember each person has a different experience, and what’s true for one is not true for all.  

We all learn different lessons at different times. Things I needed to learn when I was newly diagnosed differ from what I need to learn today and what I’ll need to learn in the coming years.  I see newly diagnosed people expressing where they are in their health journey, and I try to meet them where they are.  Usually it’s just listening and validating their experience. 

 

Some comments can be aggressive, cruel and scary. Others can validate and lift us up. The more we engage respectfully and compassionately, the less scary the internet may become. Cultivating kinship and community helps us individually and collectively. The MS Community is 2.8 million people, and the number of people who care for or about us is exponentially larger. We can make a difference.