Making Relationships a Priority When I’m Tired and Everything is Important

Taking a break to watch the salmon swimming
while on a bike ride with friends

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.  

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated. 

Rethinking beliefs: 

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritizing Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

• Text
• Write an email
• Write a letter or send a card
• Call them on the phone
• Skype
• Meet for coffee or lunch
• Go to a movie together
• Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
• Go to an event: Attend a concert, museum, or dance
• Plan an adventure 
• Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

Relationship Questions I'll Ask Now That I Live With A Chronic Illness

Here’s the hard thing about relationships when you have a chronic illness. At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us. And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either. The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice. I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other. 

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out. 

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.”  My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things. 

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

1. Can you be gentle and respectful to me when my health inconveniences you?
2. Can you respect and appreciate me if it gets messy?
3. Do I like how you treat me when I’m sick or not doing well?
4. Do you continue to treat me as a partner when taking care of me? 
5. Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
6. Are you there for me because you don’t want to be the bad person or because you want to be with me?
7. Will you go to doctor appointments with me and share my experience?
8. Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
9. How resilient are you? How do you handle stress?
10. Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible. 

Relationship Changes: How An MS Diagnosis Can Change Relationships

The personal growth that can come after an MS diagnosis affects our relationships drastically. In facing our fears, the unpredictability of MS, and grieving the future we envisioned, our relationships can’t help but change. The experience reveals the dynamics that no longer support our mental and physical health or the future we now need. A friendship or marriage can blossom, or it can crumble from the magnitude and pace of change. And the outcome doesn’t dictate the value of the relationship, determine the efforts taken to maintain it, or judge each person’s character. 

I may have been on a life path where my way of interacting would have evolved this way without an MS diagnosis, but I think the diagnosis definitely accelerated my need to take care of myself. 

I don’t relate to people exactly the same anymore. I strive to notice when I’m contributing to a poor dynamic, own my words and actions, and distinguish between my issues and other people’s issues. It allows me to have some control over my life instead of unconsciously reacting to circumstances. It also reduces the stress that comes from feeling responsible for other people’s feelings and actions and trying to fix everything.

Some people saw this as rejection or abandonment. Others embraced it, and our interactions flourished. To me it felt like I was supporting them with new behaviors that weren’t at my expense and inviting them to join me. 

I appreciate all of these relationships regardless of where they are today.  These people are all a part of my life and history. I want to support them in their own life paths that are best for them whether our paths continue to cross or not. 

Making and Preserving Memories

An excerpt from my scrapbook of my mother holding me,
and her handwritten description of my first month.

As we embark on a new year, I think about the highlights of the past year.  What makes me grin, what am I proud of accomplishing, and what was meaningful to me? How can I memorialize these things so that I can enjoy them in the future?  I think it’s important to mark the passage of time, celebrate our successes, and keep our years from merging into each other without distinction.

When asked what one thing people would save in case of fire, they often say their photographs.  I think this is telling for how important memories are to us, and I think this is helpful information for us to proactively add joy and meaning to our lives. 

If we lose our photos, we will hopefully still have our memories.  But what if we lose them with MS disease progression or aging?  I may never reach a point in my life where I experience the extent of memory loss that people with Alzheimer’s and dementia experience.  Still I think it’s helpful to look at the extreme cases and learn from them. People with dementia are sometimes able to recoup some memories through music, stories, and photographs, and this can improve their quality of life. 

Creating Memory Triggers:  We can work to improve our memory, but I also think it serves us well to create memory triggers that help us retrieve memories.  I like to preserve memories physically through photographs and mentally through tying experiences to other things like music, people, food, and aromas. I try to enjoy the moment, feel it, and store it away in the subconscious. These are some ways I enhance my experiences and create memory cues:

• Take photographs. I love my camera and tripod attachment that will allow me to take a time delay photograph of everyone in the room – no need to have one person take the photograph and be left out of the photo.  Have someone take action shots of you doing things you love. These will help you remember how you felt while doing them.
• Put photos in an album either in hard copy or digital format. Just make sure they’re accessible to look at.  If you can add notes about the photo, all the better. 
• Pay attention to music. Buy the soundtrack to a movie you enjoyed. Make a playlist of the songs you heard for the first time this year or songs that are meaningful to you at this time in your life.  
• Journal about things you care about. This is a terrific way to remember your thoughts and how you felt at a specific time in your life. 
• Relish the taste of foods you love. Tell people in your life your favorite foods. It’s pretty incredible how people tend to remember other people’s favorite foods and create opportunities for you to enjoy them. 
• Take time to smell things and register them. Think about how a baby smells fresh from a bath, how a forest smells after a rain, or how baked goods smell fresh from the oven. Take a big whiff if you like something, and pause to appreciate it. 

Preserving my memories is not a solely selfish endeavor. My memories involve my friends and family, and compiling them is a gift for them to share with or without me. My mother kept a scrapbook for our family when I was young, and the stories she wrote to accompany photographs truly tell a lot more beyond the photographs. She’s been gone many years now, but seeing her thoughts preserved in her handwriting brings her back to us in a special way.  My sisters and I treasure them, and things we may have known at one time but hadn’t remembered are available to us now.

With MS, other neurological diseases, and just aging in general, cognition and memory can be something that declines.  The idea of losing my memory is scary, but it’s less so when I can actively do things that may improve my life now and for years to come.

Resources:

• Music & memory is an organization that provides iPods with personalized playlists to people with Alzheimer’s and dementia that improves those people’s quality of life. https://musicandmemory.org     
• StoryCorps’ mission is to provide people of all backgrounds and beliefs with the opportunity to record, share and preserve the stories of our lives. They have an app that allows anyone to record their stories.  https://storycorps.org/ 

Fear, Gratitude & Hope Through Giving

I’ve learned a lot of lessons since Multiple Sclerosis became a part of my life. Among my attitude shifts that helped the most was losing the fear and focusing on gratitude and my ability to give.

When I was first diagnosed, my immediate fear was becoming disabled, losing my job, and losing my health insurance. We’re all different, and this was my biggest fear at the time. I attended the local MS self help group meeting where I met people with MS with varying levels of disability. I worried that they would think I didn’t belong at the meeting since I had no disability. I needn’t have worried.  They welcomed me with open arms and incredible empathy.

I introduced myself, told them a little about my story, and then expressed my biggest fear at the time. They immediately assured me it was all manageable, and they described their own experiences transitioning from working professional jobs to being unable to work. Truly it was a gift they gave me.  My biggest fear was something that they had experienced and gotten through, and they still lived full lives and had optimistic attitudes.  It was a huge relief to know that what worried me most was something that they had already dealt with and had advice for how to get through if that time ever comes for me.

I even met a quadriplegic woman in a fully assisted wheel chair whom I would have expected to judge me as not deserving of my anxiety, and she apologized for being at the meeting. She wanted me to know that her extreme MS progression was not the norm, and she wanted me to know there is hope. In what I judged to be my worst fear at the time was her reality. And she was worried about my fear. Her compassion as well as that of the rest of the group attendees touched me deeply then and still does now. It relieved my fear and made me believe that whatever might come would be manageable.

Along with the assurance that potential physical loss doesn’t need to be so scary, the people I met in the self help group helped me to see an appreciation for a life worth living even with full disability.

It was after reading the book, “29 Gifts” by Cami Walker, that my perspective shifted even more about my value in the world. Through practicing daily giving, I learned the wide range of gifts I’m able to provide that don’t depend on money, my job, or my mobility. It convinced me that even if MS takes all it can from me; I’ll still have value and an ability to contribute to society.

The opportunities to connect with people exist everywhere, and I think of connection as a gift I can give. An easy way to connect I've incorporated into my life is to slow down when I'm in a check out line at the store. As a society we tend to go on automatic pilot with a script where we each ask how the other is and respond we're good. I try to avoid being on autopilot, and I'll stop and talk to the person. I make eye contact, and I ask or comment on something other than the typical "how are you" script. I've noticed that people are visibly surprised and touched when they're treated as individuals.  Whether that person thinks of my attention to them is a gift or not doesn't matter. I intend it as a gift and a contribution to a better society, and that's my gift. 

Believing these small efforts and interactions are a contribution to a better world helps relieve my fear of becoming a burden. It gives me not only hope but an expectation that I can live a life worth living even if my body deteriorates.  No matter my level of ability, I’ll still have something to offer this world and not only the capacity but a justifiable right to enjoy living. That shift in belief helps me feel genuine gratitude for not only the abilities I continue to have but my capacity for giving to society in any physical condition. This belief not only helps ease the fear of the future and unknown, it enriches my life experience and builds relationships. Not too shabby. 

Responding To Comments That I Need To…(fill in the blank here)…

It personally bothers me when I read online articles telling people “What every person needs to do…”and presenting it as fact. They don’t know me, and what may work for the masses may not be appropriate for me. 

A simple example of this is kale.  Kale is very nutritious, has a lot of health benefits, and I feel good when I eat it. People with hypothyroidism or taking blood thinners need to avoid kale.  What’s good for many people is not good for every individual. 

It’s common for me to explain to people suggesting I take immune boosting products why I don’t. People think that because they’re successful avoiding or recovering from colds by taking immune boosting products that I should take them too.  I’ll nicely explain that I take a disease modifying drug to suppress my immune system because it works too well.  While I want to maximize my health, intentionally trying to trigger my immune system to start fighting isn’t good for me. I also explain that eating foods with anti-inflammatory properties does work well for me. We’re all different.

So while it bothers me to have someone tell me they have the answer to my problems, I respond to it the same way as if they’ve just made a suggestion.  I’ll honestly let them know whether I’ve already tried it, I’m doing it now, I’ve tried it and it didn’t work for me, or that I’ll look into it. I have a mental list of things I want to try but am not ready to do yet.  Some of them like doing yoga and seeing a naturopath took me years before I was ready to try them.  When I did, they were a huge benefit to me and I wished I’d tried them sooner. I followed up with the person who’d made a suggestion and thanked her.  I let her know I’d finally done it and loved it.  

Response Toolbox: I like to think of communication as a toolbox with tools that we use regularly and others that don’t come as naturally.  Sometimes we use our standard tool and it works great. Other times it takes three or four tries with different tools before we convey our message. I’ve found that the following methods have worked for me in response to comments that make me uncomfortable, that seem hurtful, or that I’m not up for answering in the moment.  You’re likely to have your own go-to methods that fit your personality.

• The blow off: If a comment is too ridiculous or mean and you don’t want to address it at all: pretend you didn’t hear it. Focus on something or someone else and continue the conversation.
• Incredulous silence:  If you want them to know it was inappropriate or hurtful, a paused look of shock can work. And move on to something else. 
• Honesty: Say their comment is hurtful or too personal for your comfort level and you’d rather not discuss it.  And move on to another topic.  
• The improvisational approach. Consider the comment as valid, build on it to the ridiculous and humorous conclusion, and laugh it off.  It works best if your response really is funny and doesn’t embarrass the person who made the initial comment.
• Find an advocate. Turn to a friendly face in the group and ask what they think about the topic through eye contact or explicit words. 
• Connect: Find the kernel of accuracy in what they’re saying, and comment on how that is true before explaining more about your experience.  
• Insight: Someone has said something completely foreign to anything you’ve thought before. Say that’s interesting and you’re going to think about it.
• The delayed response: Sometimes a comment sticks in my head long after the conversation is done. I allow myself permission to bring it up later after I’ve thought about it. There’s no time limit to letting someone know that something they said made an impression on you.
• Reschedule: If my energy is low or the event isn’t really conducive for the conversation and I really would like to discuss it another time, I’ll tell them. 
• Defer: I’ll tell them there is a lot of information on the web about this topic, and I’m still learning all the time.  There are some terrific websites and articles that might be able to explain it much better than I can.  If they’re interested in them, I’ll email them later.    
• Question: Repeat what you think their question was and ask them if your understanding is correct.  If not, they can clarify what they’re asking. Ask them to tell you more about why they’re asking.  Sometimes people ask leading questions because they want to tell you something.  Let them. 

Responding to questions or comments gets easier and more natural with practice. It’s also extremely rewarding to shift a draining and stressful situation to a rejuvenating moment of understanding and connection. 


For tips on MS conversations see my post "Talking About MS," and for additional perspective on this topic, see “What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments.

Talking About MS

Over the years, it’s gotten easier and easier for me to talk about my MS and respond to questions and comments. When I was newly diagnosed and didn’t understand how MS affects my body, I felt a little anxious when people would bring up the subject expecting me to have all the answers. And sometimes I was just too fatigued to have the energy for thoughtful discussion.

I went from knowing nothing about MS to being an expert in how MS affects me. It took a lot of time and effort, and it’s helped me to manage my health better and be able to respond to questions and comments. Now I think of MS conversations as more of an opportunity to connect than a list of pat responses.  

Lose the guilt:  I think a lot of my anxiety in these early conversations was due to me not wanting to accept that MS will affect my life. I wanted my will to override the physical restrictions MS was placing on me. It took time for me to fully accept that I can’t control or outsmart my body and do everything I used to do or want to do. While I was holding on to the feeling of inadequacy, I couldn’t discuss my MS without feeling a little shame or guilt.  And that mindset makes every conversation uncomfortable for all parties. Accepting I can control some things and not others allows me to talk about my MS with confidence. MS is not a character flaw; it’s a medical fact about how my body functions. 

Assess the situation: Think about the event and make a goal. Is it to get through the occasion? Is it to have fun and avoid drama? Is it to connect with certain people and have long, meaningful conversations? Each situation will lend itself to a different response.

Determine their motive: Why are they saying what they’re saying?  Are they trying to be mean and judgmental?  Or are they seeking assurance that you’re okay and they don’t need to worry about you?  There’s a difference.  A person genuinely trying to help deserves compassionate response.  On the other hand, a miserable person that enjoys drama and putting people down is always going to win at their game. They’re too good at it.  They’re not reading articles about how to get better at dealing with people they want to make feel bad.  If you don’t feel comfortable talking to these people, avoid them if you can.  Solicit someone to be with you that can help you cope, by either sticking up for you or diverting the conversation. Lashing out or trying to make the person feel hurt like you feel won’t help in the long run. 

Consider the source:  Is the challenge how that person interacts with you, or is it the topic that worries you? There’s a big difference. People that are consistently aggressive or love to put you down because they’re “just kidding” can be dealt with differently than people that are trying to be helpful but are pressing your buttons. 

I try to remember if I’ve ever had a good interaction with this person and what made it good.  It sometimes gives me some ideas for how to deal with future conversations. It’s also helpful to consider how informed this person is.  Even if they know a lot about MS, I know they don’t know my body or experience as well as I do.

Know yourself:  When we’re at the top of our game, we might be able to roll with an insensitive comment easier than when we’re tired, feeling overwhelmed, and experiencing MS symptoms. We all have certain things that make us uncomfortable. Knowing and accepting my triggers allows me to get through situations better.   

Stay true to yourself. Be you. Be the person you like being. The interactions I’ve regretted have been the ones where I felt baited to respond in a way that doesn’t align with my core. Don’t let another person’s comment dictate your mood or change how you feel about yourself. This can be tough when you’re feeling low or frustrated that you even have to deal with MS at all. The guidelines I aspire to may be different than yours, but I’ll include them here as an example:

• Be genuine and sincere.  Coming from a place of anger allows them to diminish your feelings with justification.  Coming from a place of curiosity and connection may not always succeed, but at least you can feel good about how you behaved in a stressful situation.
• Be funny. Be willing to laugh at your situation if you’re able, whether they’ve made the joke or you have.
• Lead by example. You teach people how to treat you by how you react and how you treat them.
• If you blow up, make amends when you can, and forgive yourself. 
• Remember it’s a conversation and not a pop quiz or Q&A. The focus doesn’t have to stay on you.  You don’t owe anyone a response to a question that makes you uncomfortable.
• Remember you don’t have to be perfect, and neither does anyone else.

Invite Connection: Some people are worried about saying the wrong thing, and they may need you to give them permission to talk about your MS.  When someone like this asks how you are, answer them honestly. And simply tell them that you’re happy to answer any questions they have. It lessens their anxiety and invites conversation. It also reduces the burden on you to figure out what they want to know.

Ask them what their experience with MS is. Have they known people with MS?  What’s their knowledge about it?  I didn’t know anything about MS when I was diagnosed, and I knew of one person socially that had MS. I’d seen her once with a walker and visibly struggling, and a year later saw her looking fine. Given my extremely limited knowledge of MS before I was diagnosed, I can relate to people that have no concept of MS or other chronic illnesses.  

I’m glad when people have an interest in learning more, and I want to encourage them. Being a safe person to ask questions builds compassion and empathy on both our parts. I’ve learned a lot and come to a greater understanding about myself and others through these MS conversations.  Even better, I’ve received a lot of support, felt good about myself, and enjoyed a LOT of laughs.

For tips for responding to questions, see my post "Responding To Comments That I Need To…(fill in the blank here)….," and for additional perspective on this topic, see “What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments.

“What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments

Articles titled, “What you should never say…” are pervasive on the web.   It seems like these posts focus on how rude people can be, how they are the problem, and how they need to change what they’re doing. I think this perspective gives away our own responsibility to our relationships. It can victimize us in situations where intent wasn’t malicious, and we may have the power to view it in a way that’s helpful to us.

Yes people can be rude and I understand the intent of the articles is to educate people, but the critical lecture approach worries me. I think they can discourage conversation and connection. In my experience most people aren’t intentionally insensitive, they’re just uninformed. Good for them that they haven’t had that experience that would have taught them more about having a disease or other challenging experience.

I’d prefer to encourage the dialogue and allow for grace when people put their foot in their mouth. An inappropriate comment doesn’t have to end the conversation or begin an argument; it can be a starting point.  I also think that telling people what not to say without giving suggestions for what to do instead just silences people and makes them afraid to say anything.

We all have moments of vulnerability and strength. What may feel right as a response in one instance may not feel right in another. I think everyone should be allowed the opportunity to snap once in a while, and I hope my relationships can be at a point or grow to a point where it doesn’t break the relationship. If we consistently snap at people, come back with sarcastic responses or witty retorts, we’re telling people to stop talking to us. And that can harm us by severing relationships and isolating ourselves.

As someone who in the past has been well-intentioned but awkward to friends that are experiencing disease and loss, I sympathize with people who want to say something helpful but don’t know what to say. I look back and see how my reaction to a friend with cancer was concerned and caring but may have come across as pity given my tone and ignorance.

At times when I’d describe a symptom I was having, I’d become frustrated with someone who would always say to me, it’s nothing, it’ll be fine, or it’s not that bad. I finally asked, “Are you saying it’s nothing because you’re trying to make me feel better?”  It surprised me when the answer was yes.  It was a huge shift in the relationship once I understood this, and I wouldn’t have learned this if I hadn’t asked. It validated my experience instead of denying it, and it helped me feel compassion for those that care about me.  It’s easy to assume what those close to us are thinking, because we know them so well.  Checking in and allowing for surprises or alternate motives allows for more productive communication and understanding.

We can get really good at communicating and understanding our symptoms and disease, but we’ll always have relationships with people that don’t get it. I can get frustrated that they don’t have an amazing grasp of communication, understanding or compassion; or I can work on bridging the distance between us.

There may be times when it doesn’t feel worth the effort to talk about a comment made, correct a misconception, or learn more about what someone thinks. I try to think of communication as an investment in the relationship and an opportunity for me to learn something new or gain a new perspective.  

My unsolicited advice to the person with MS on the receiving end of comments or questions: Lead by example for the level of connection you want to have with this person.

You don’t owe anyone an answer for a question that makes you uncomfortable. Ask them why they ask. Or just say you don’t feel comfortable answering that. If it’s just not a good time, you can say you don’t feel like talking about it right now, you appreciate them asking, and you’d like to talk about it another time.

If you do want to connect after being offended or hurt by a comment, consider hearing what might be the person’s feelings behind the words. This might take asking questions about what they’ve said. A helpful non-confrontational response might be, “tell me more about why you think that.”

The table below shows comments said to me about symptoms or my MS with my initial reaction, what I try now to hear instead, and what I’ve said in response. 

The perceived behavior	Actual Comments  said to me	My Initial reaction	What I try to hear instead	What I’ll say
Deny	It’s nothing, you’re fine.	You don’t believe I have a problem.	I’m worried about you and I want you to be fine.  I’m trying to reassure myself that it’ll be fine.	Are you saying that because you’re trying to make me feel better? I appreciate that you care. I hope It’ll all be okay too.
Misconnect	I have that too! Everyone has that as they get older. It’s normal.	You don’t get it. It’s not normal. For me, it’s due to MS.	I have that, I think I understand what you’re going through and I’m trying to relate. I want you to be okay, and I want it to be normal.	It’s true that aging and other conditions can cause similar symptoms.  It’s not normal for people my age to have this, and it can be frustrating to have to deal with this while I’m still young.
Overreact	OMG, it’s so terrible!!!  Your life will never be the same. I feel so sorry for you…	You pity me but don’t want to understand me.	I’m scared for you, and I’ve never had to deal with something like this. I don’t know what I’d do if it was me.	Thank you for caring. This has been a big impact on me and I’m working on doing what I can to live the best life I can.
Silence	Avoidance or awkward pauses	You don’t want to talk about it and/or you don’t care about me.	I don’t know what to say and I’m afraid of saying the wrong thing. I’ll follow your lead.	As you’ve probably heard, I’ve been diagnosed with MS.  I want you to know it’s okay to ask questions if you like.
Diminish	But you look so good!	It must not be as bad as you’re portraying.	I don’t understand how you can look fine but have a serious disease. I thought sick people always looked sick.	I know, isn’t it weird how people who look healthy can be really sick? Invisible symptoms are so deceiving.
Fix it	I know what’s wrong with you, and if you would just (fill in the blank here with a cure, a diet, a medication, …) you’d get better.	You’re not doing enough to fix your disease. If you would do more, you’d be fine.	I care about you, and I heard of something that might cure you.  I really want you to be cured.	I really appreciate you caring about me and passing along information you think might help!  Please continue to pass along things you see (only say this if you mean it). I’ll look into it. I talked to my doctor about it, and his opinion was… I already have looked into it/tried it, and unfortunately it hasn’t held up in studies/ worked for me. There are a lot of ideas out there about what can help. Unfortunately there are a lot of people making a lot of money off sick people.
Pity or Condescension	How (long drawn out) ARE you?  With a head tilt, sad face, and exhaling tone.	You pity me and think my life is over.	I want to connect with you, but your experience is foreign to me and I don’t know another way to talk to you .	Thank you for asking. This has been a big impact on me and I’m working on adjusting.
Blame	Disease is really “dis-ease”.  If you fix your stress or life imbalance, you’ll heal yourself.	You caused your disease.	I’m trying to understand why you got sick, and I want to protect myself from getting sick. I want to help you get better.	That’s a concept that makes a lot of sense, and a lot of genetic and environmental factors contribute to things beyond our control. I think we do the best we can, but sometimes it’s just the luck of the draw.
Disbelief	Unless you fall down on the ground, I won’t believe you have MS.	I don’t believe you have MS.	My experience with friends with MS has been people very debilitated by their disease. You look fine and are more active than most people I know. Maybe you’ve been misdiagnosed.	There are four types of MS, and your friend probably had a very severe type of MS. I put a lot of effort into being healthy and into accommodating and preventing the symptoms I experience. I’m fortunate that it’s working for me so far.

To the person who doesn’t know what to say or is worried about saying the wrong thing.  Say more, not less. Come from a place of curiosity and concern. Allow for the person to not want to talk about it. Certain symptoms are embarrassing socially, and not everyone is willing, able or ready to share such personal information with everyone or maybe anyone yet. Leave space for them to come to you when they’re ready, if they’re ever ready.

Consider saying things like, “I care about you and am curious what your experience is. What’s it like? How do you feel about having MS. How are you doing? I’d like to be helpful, but I don’t know how to help you.”  

I think when we’re able to see beyond the words that are said and put effort into understanding each other’s feelings and perspectives, it can only help us feel supported and respected. And that makes us all healthier and more compassionate.

Pay It Forward: Talking To People Newly Diagnosed With MS

People newly diagnosed with MS are understandably rattled. I try to pay it forward with compassion and by sharing the insight I've gained over the years. It's personally rewarding and hopefully helpful to them.

I met with someone this week that was recently diagnosed with MS. She’s justifiably having a hard time, and I’m glad she sought out the NMSS self-help group. She contacted me and attended our group meeting. We agreed to have lunch following the meeting, and at the end of our long lunch she hugged me and said she felt better. This was the best gift she could have given me.

I was diagnosed seven years ago, and I remember how lost I felt. In 2008 there were web resources, but not the volume and patient interactive groups that exist today. I scoured the local library and web for information, but I felt like anything that I related to was few and far between.  Now the advice online is overwhelming in volume and the range of advice contradictory. I think having someone to talk to one-on-one that understands and is experiencing the same illness is useful.  I hope to help others when they ask.

I’ve spoken with newly diagnosed people a few times now, and I think it’s been helpful that when I talk to them I try to:

·         Listen to them. Ask them about their experience so far. Leave it open. They’ll focus on what’s important to them.

·         Validate their experience. When a person shifts from pre-diagnosis to post-diagnosis, everything is viewed through a new lense. And every relationship they have with each family member and friend is going to change.

·         Offer personal experience in similar situations, but acknowledge that their experience may be different.  Know that what helped me may not be what will help them.

·         Acknowledge that each case of MS is unique and because of that, I think each experience is paradoxically normal. MS is very confusing with a wide range of symptoms. Some symptoms are vague, and others are glaringly affecting. But none follow the cause and effect explanation that an injury provides. A twisted ankle may hurt, and you can conclude it’s sprained. There’s not usually a triggering event that explains fatigue, blindness, numbness, constipation, paralysis, or pain. It can come and go with no way for us to understand how we can stop it or prevent it next time.

·         Each person is on a journey. Not all information is useful or able to be absorbed when everything is new and overwhelming. Pick the most frustrating issue for them, and plant a seed of solution or hope.

·         Ask them as they reflect now if they had symptoms that came and went in the past. They may still be in the midst of an exacerbation, and feeling terrible, depressed, and scared is normal while still having an exacerbation. Especially when an MS diagnosis has come out of the blue. It’s frustrating that no one can predict how long the exacerbation will last, but if symptoms came and went in the past I’d guess that they will subside. I’m 99% confident that this person will feel better again.

·         Assure the person that they don’t need to worry about forever right now. Give it three months to see if symptoms improve. And if symptoms don’t improve in three months, they can figure out what to do then. There's no need to worry now about what may not be a problem in the future.

·         Let them know that life can be better after MS diagnosis. Children can learn to be more compassionate and independent. Relationships can grow to a healthier dynamic. Being forced to deal with the limitations MS demands can also lead to living a life worth loving.  Gratitude for what still is can make for more joy in life.  

·         Offer to be available in the future to talk. They may or may not call. But sometimes just knowing someone would be there is enough.

As I compile this list, I recognize I strive to do these things and I may be better at it sometimes than others. We’re all human.  I’m not the person I strive to be all the time, but I’m getting closer each day.  I may have more to add to this list as I grow and learn more, but this is a good start. I’d love to hear suggestions!

The Lasting Love of a Long Gone Mother

My mother's senior photo with flowers I know she'd love

May 21, 1994 – The day our mother suddenly left this world and our lives changed completely.  We became four newly motherless daughters at the ages of 27, 23, 20 and only nine years old. I still feel cheated that we didn’t get more time with her, but I can feel her loss now without being consumed by pain or resentment.

For a long time I thought people had a hard time with death, but I’ve since realized that people were likely reacting to my raw pain when they changed the subject.  Fortunately it’s been some time since I became able to talk about her with joy and ease in conversation that no longer makes people want to flee.

The biggest change I made that helped me to feel less pain for her absence on holidays and birthdays was to create new traditions. I chose to write letters to my sisters commemorating the occasion and honoring our mother.  The first letters are a bit tough to read because I can see I was suffering even though I had hope. Putting my thoughts in writing and sharing them with my sisters allowed me to feel more connected to them. Suffering alone left me stuck, but reaching out to others honestly and with vulnerability led to a path beyond the grief.

I’ll hear songs or experience something and think about how I wish I could share them with her. She’s been gone 21 years this month, and there’s been so much in our lives she missed. The lessons she taught us by the life she lived and the stories she told still come to mind frequently. When she’s in my dreams, it’s lovely to interact with her in new conversations.  With changes and accomplishments my sisters and I have, I like to think about what our mom would have thought. I know she’d be extremely proud of each of us, and I’m proud of the person she was and the legacy she left.

A lesson I learned when my mother died is one I try to live by still – make sure each of my relationships is in a place I’m okay with if one of us is gone suddenly. It doesn’t mean all of them are happy, but at least there isn’t something I would regret if I never see them again.

My mother died in an airplane crash. There were no goodbyes or preparations for her absence. But my relationship with my mother was in a place where we loved each other, we had fun together, and we were honest with each other.  As a mother she created that relationship dynamic, and for that I’m immensely grateful she left me with our relationship in a good place.

Learning To Pause Helps Me Cope With MS Symptoms

In an effort to live a full, productive and enjoyable life, I’m finding that I need to learn to read my body’s signals and rest.  Resting is an activity I’m learning.  You’d think it would be easy.  Just stop what you’re doing and watch TV, sleep or whatever.  If only it were that simple.

I was moving slow this week with low, low energy.  For the past few days everything has been taking an inordinate amount of effort.  Just showering, grooming, dressing and eating breakfast today were cause to lie down for an hour to recharge.   I thought I would go to work a couple hours later than usual in order to budget my energy.  I took a short walk – just two blocks! – to get a latte, and while waiting I realized my body was tingly numb from the waist down.  Okay, I get the message.  I need more than a couple hours extra rest this time. 

I called my boss, told him I’d be taking the day off and explained my Pause Approach.  My intent is to take breaks in my schedule intermittently with the hope that I won’t reach a point of having a full exacerbation leading to a week or more off from work.  Oh, and possibly temporary or permanent damage to my health and mobility.  Funny how my focus is on work first!  Perhaps that’s why I struggle with learning to pause…

I’m learning the importance of sharing my experience with people that care about me or rely on me.  I know sharing a health diagnosis with employers isn’t always the right path for everyone.  For me though, it’s been an opportunity for support.  My coworkers and bosses have been highly supportive of my efforts to attend to my health.  Whether it’s because they care about me or just want me back at work at 100% quickly really doesn’t matter to me.  I do suspect it’s the former though.

My friends and work colleagues express worry when I don’t go to work.  They’ve said they know I must not be doing well if I miss work.  I’ve found their worry adds a layer of stress for me.  I feel pressure to assure them I’m okay and to get better soon so they’ll stop worrying about me.  So I’m proposing to them that I will proactively let them know whether I’m just doing what’s best for my health as normal maintenance or whether I’m experiencing something new and noteworthy.

Today’s efforts to practice and maximize Pause Approach effectiveness led me to create the following guidelines for myself:

1. Look into yourself.  What do you need most right now?  The answer will be different from moment to moment.  Check in frequently.
2. Rally the troops on standby.  Let people know who care that you’re managing your health and this is a normal part of your life.  Promise to let them know if there becomes cause for worry or a need for assistance.
3. Reduce input.  Focus on one thing at a time.  Limit technology as it can make your eyes tired and tax your brain. 
4. Wear comfortable clothes, but still get dressed and groomed if possible.  You’re not sick; you’re maintaining your health!
5. Move your body.  Stretch, do a single yoga sun salutation if possible.  A slow sun salutation can stretch most muscles in the body, raise your heart rate and lift your spirit.  It takes energy, but the physical and emotional reward is tremendous.  If you don’t feel up to much movement, just move from the bed to the sofa or a chair.  Any movement helps!
6. Don’t move your body.  Lay down.  Close your eyes.  Meditate.  Make yourself so comfortable that there is nothing else you’d rather be doing in this moment.
7. Nap only if necessary.  Maintaining a regular sleep cycle is important, and napping can disrupt nighttime sleep for days to come. 
8. Open the drapes or blinds.  Let in the daylight.  Rest somewhere other than bed if possible.
9. Stick to regular routines for meals and snacking if possible. 
10. Do something productive.  Journal, learn something new, research a topic, declutter, organize, write a thank you note, or make a healthy dish.  Limit it to the level of your energy, and don’t push too hard.  Intersperse these activities with doing absolutely nothing.
11. Be responsible and responsive.  Know your work and social commitments so you may cancel or postpone them proactively.  Or go in to work for an hour or so and do the absolute minimum that can’t be postponed or canceled.  Leaving colleagues and friends scrambling to cover for your commitments will understandably cause frustration and resentment on their part, guilt on yours, and more tension in your life.
12. Seize opportunities to pause.  An unscheduled hour or two during your work day may be ideal for taking some personal time off from work.  This may help reduce the instances of needing to take a full day off from work and the impact to your colleagues.
13. Congratulate yourself for having the strength and good sense to listen to your body’s signals and adapt your schedule to accommodate them!