Tuesday, March 19, 2019
As I age, I’m getting more intentional about who I spend time with and how I shape interactions. We can’t always completely avoid people who drain us, but we can shift how we approach our interactions. We can’t always spend enough time with the people we love, but we can shape our relationships to maximize our joy and connection. A lot of our daily lives involve acquaintances who with a small amount of attention can become friends. Our friends and family won’t always have the skills or perspective to meet our needs, but we can find circles of friends who will fill the gaps.
People who drain me: If I can limit time with them, great. If I can’t, I like to assume they’re doing the best they can, I’m not going to change them, and perhaps they shouldn’t change. I’m not perfect, and I likely have aspects of my personality that some would find irritating. I’m not going to come up with a comprehensive list of personal flaws, because I think that would be extremely bad for my self-esteem. I’d rather look at it as we all have our issues that are both good and bad. Some find our quirks endearing, while others find them unbearable. The aspects of others that drain me aren’t inherently bad. They just don’t mesh easily with me and my set of character traits and preferences. For interactions that I find extremely difficult, I’ve spent time listening while repeating a mantra fitting to the challenge. In the midst of having someone spout off at me at work, I’ll mentally repeat to myself, “They’re teaching me to be better at my job.” For times when I get frustrated I’ll repeat, “They’re helping me practice being patient and kind.” I might even have to get clear with myself about how I’m contributing to the tension and repeat, “It’s not their fault I’m crabby today - get it together.”
For the people I would love to spend more time with but am not able due to distance or schedules, I find ways to connect in hopes of enriching the relationship with limited interaction. Certainly we can call, text and facetime, but simple things like playing online games keeps me feeling in touch with people I don’t talk to often. One friend plays one move of a Scrabble game each morning, and I play one back. When I saw her recently after many months, she verbalized what I felt too – we feel connected with just one play per day. Random messages about things that make me think of them are easily shared via text, email or social media.They know I was thinking of them, and I feel good letting them know.
We spend a lot of time with a lot of people in short spurts of time. They may be our medical care providers, baristas, grocery store checkers, mechanics and neighbors. These are the relationships that aren’t close, but they can be immensely helpful to living a high-quality life. When we make them friends and contribute to quality interactions, our lives are richer for it. Smiles that brighten our day help us be more likely to react with grace when encountering rudeness or frustration. If we expand the circle of people we consider to be part of our life, we recognize how much they contribute to our happiness and how much we may influence theirs.
Online groups can be instrumental to meeting some of my emotional needs when I don’t personally know people similar to me. Very few of my friends have a chronic health condition like I have. I know even fewer who are experiencing my health challenges and have an activity level similar to mine. Social networks like My MSAA Community and closed Facebook groups have been excellent for me to connect with people similar to me in one or more ways. I belong to one group with women who do triathlons. Another is for women with chronic illnesses who do triathlons. I belong to a group for people interested in sharing research related to MS. Another is a personal share site for people with MS. These sites feel like safe places to learn more about things that can be embarrassing from people who know what it’s like to live with chronic conditions. These sites provide me with inspiration, motivation and helpful tips for my fitness goals. They also provide validation for the frustration I experience when my body holds me back and I’m sad that my life includes Multiple Sclerosis. I get a lot from them. And because I get so much, I’m compelled to share and support others in these groups. Receiving support from others helps, and so does giving.
The people who surround me give me inspiration, motivation, comfort and strength. They validate my struggles and celebrate my accomplishments. Even the challenging relationships teach me where I have opportunities for personal growth. Whether they are close friends, quick daily interactions or distant online acquaintances, they help me navigate my journey and contribute to a life I love.
Sunday, February 17, 2019
I used to feel such relief that I was married and didn’t need to be out in the dating world. It sounded horrible, and I enjoyed having my relationship set with the expectation there’d be no divorce. Then I started having health issues and was diagnosed with Multiple Sclerosis after 15 years of marriage.
When a married person is diagnosed with MS, the rate of divorce is about the same as the general population, but the gender disparity is enormous. A study by the Fred Hutchinson Cancer Research Center found that women diagnosed with MS are six times more likely to get divorced than men diagnosed with MS. Women tend to stay with their husbands when the man encounters cancer or chronic illness, and marriages tend to end when the woman is diagnosed. This statistic doesn’t even address the situations where people stay in a marriage with a caregiver partner involving abuse. People with MS are more likely to be victims of domestic violence including mental, verbal, financial, sexual, and physical abuse and neglect. The fear of being alone or the ability to live independently overrides the pain of living in an unhealthy relationship.
I know my health created issues in my marriage. I enjoyed being a strong, caretaking woman, and that worked in my marriage for many years. Then MS entered my life, and the dynamics changed. I changed. My diagnosis not only added a level of fear for the future, it shifted my perspective on life. It motivated me to do everything in my power to enjoy life, be as healthy as possible, and learn healthier relationship skills. Improving my emotional and physical health made the cracks in our marriage glaring. Ultimately, we weren’t able to grow together, and we divorced.
With years alone and working on improving my life, I recently delved into the dating world. It was intimidating and made me feel vulnerable. The landmines to navigate increase when dating and living with MS, and the potential heartache is scary.
I’m learning that my emotional wellbeing is fragile and can be easily hurt with people who don’t have healthy relationship skills. While I don’t want to judge or demand perfection from people, I am trying to assess whether a relationship that will be good for both of us is possible. It takes time to get to know someone to see beyond the chemistry, and I’m going to get attached before that point happens in any new relationship.
I’ve come to believe that learning how to recover from rejection is more my style than trying to protect myself from feeling heartache. Protecting myself feels like withholding, and I’m not comfortable starting a relationship feeling like I’m hiding. I want to enter a relationship with an open heart and provide full disclosure for possible deal-breakers. I know that some people may take advantage of that or judge me as foolish, but I don’t know of any other way to be genuine and true to myself.
As such, I embraced dating as an opportunity to meet people and learn more about what matters to me in a relationship.
I’ve consistently disclosed I have MS on the first date when the match looked promising. I describe it as a fact of my life that may be a deal-breaker for them, and I let them know it’s okay if it is. My logic is that I don’t want to waste time with someone who isn’t up for it. I’d rather they have the opportunity to decide early if they’re up for it rather than wait and learn later. Waiting to disclose would feel like I’m hiding or feeling shame about the facts of my life and health. I have more information about my possible declining health than others, but the fact is none of us knows what the future holds for us.
I dated one person who ghosted me after three months of seeing each other. It was surprising to me in the moment, but it’s not surprising in hindsight. After a few days of feeling hurt, I shifted to being grateful that he’d ended it for us. It helped me see which behaviors should be deal-breakers for me. I realized I’d put chemistry ahead of things that matter to me, and I’d dismissed things that won’t lead to a relationship that is good for me.
Moving forward with a new relationship, I’m planning to review the list of relationship questions I’ll ask periodically. These questions will be different for each person, and I’m working on feeling confident in mine as reasonable. If my expectations are too much for someone, it means that person isn’t right for me. If they end things with me, I’m working on seeing it as them doing me a favor rather than feeling rejected.
I’m also working on not putting too much pressure on myself to figure out forever right now. I think anticipating what the future holds and having discussions about how our lives might meld are necessary. These are the fun discussions about our bucket lists, careers, hopes and dreams. These are also the vulnerable discussions about how my health affects me now and how it may lead to disability someday. None of us have guarantees for the future, and I’m trying to plan my future with a range of health situations. I may be exactly as I am now with continued common aging issues, or I may need to live in an assisted living facility with daily care. For now, I anticipate my future will be somewhere in between. I’m likely to need a cane or walker someday, but I’m optimistic I’ll be able to work until early retirement age and live independently. I could be completely right, or I may be completely wrong. I’ll know more as each year passes.
We all have aspects of our lives and personalities that are deal-breakers for someone else. We are also all worth loving. The right person for me will acknowledge my health, will want to meet my needs, and will see my MS as a part of me that makes me the person I am. A rejection from someone is something to receive as a gift. They’ve let me know they aren’t right for me, and they’ve freed me to find someone who is.
For more, see my post about Relationship Questions I'll Ask Now That I Live With A Chronic Illness
1. Gender disparity in the rate of partner abandonment in patients with serious medical illness.
Study Source: Fred Hutchinson Cancer Research Center
November 10, 2009
Summary: A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient, according to a study that examined the role gender played in so-called "partner abandonment." The study also found that the longer the marriage the more likely it would remain intact.
2. Relationship Between Domestic Violence and Multiple Sclerosis
Margie O’Leary, MSN, RN, MSCN; Sherie Lammers; Anne Mageras, BSW; Marilyn Boyd, MSCN; Rose Constantino, PhD, RN; Rock Heyman, MD
International Journal of MS Care
3. Caregiver Abuse and Neglect of People with Multiple Sclerosis(P06.198)
Elizabeth Morrison, Aileen Wiglesworth, Dara Sorkin, Laura Mosqueda
April 26, 2012; 78 (1 Supplement)
First published February 8, 2016,
Wednesday, January 16, 2019
Sometimes we want to make changes, and sometimes we need to make changes. We choose some, and some are thrust upon us. It doesn’t always mean we’re ready or able to make them. Making a fresh start can be exciting and intimidating.
I’m a big fan of trying to make these changes easier. Like the placebo effect can help us feel better when we take sugar pills thinking they’re medication, I’m all for using how our brains work to – for lack of a better word - trick myself into doing things I want to do.
How we think, our opinions of ourselves, and the language we use can limit us and our personal growth. I’m considering which of my memories, thoughts and reactions aren’t serving me. Some of them make me feel like a powerless victim. I want to lose the ones that are holding me back from doing things I want to do and from being who I want to be.
With my divorce from a long-term marriage final, I’m making a conscious effort to change the stories I tell. Things that were funny and garnered laughter when shared previously are now sad given our relationship ended. With self-reflection and practice, I’m learning to stop myself before telling some of these stories that feel like automatic responses in conversation. When friends or guests would ask where something is that I don’t have, I initially said, “I used to have some, but I didn’t get them in the split.” Over time, I changed it to “I haven’t replaced them yet.” Recently I didn’t say anything when it came to mind in conversation. Soon, I may replace some of these items with things I love in hopes of adding more enjoyment to my new circumstances. I think once I’ve trained my brain to react with a thought that is pleasant for me, I’ll have completed the transition for the better.
If I keep telling myself or others about memories that make me sad or feel bad about myself, I’m hampering my ability to move on. I’m actively working on a new life and creating a new outlook in an effort to respond in ways that make me feel good about myself. I don’t need to forget or ignore challenges, but I don’t need to keep giving them power over my future. I get to be the editor of my life story, and I can be intentional about what serves me well for what’s to come.
When I think about my body and my health, am I focusing on what I’ve lost or what I’ve gained? It pains me when I think, “Multiple Sclerosis took this from me.” It’s true, it did. MS has taken a lot from me, and it’s not something I dismiss. It took from me the ability to do some activities I enjoyed. It took my sense of self as it was. It revealed my belief about my excellent health to be one of ignorance. It’s taken years for me to learn how my MS affects me and what helps me live well with it. If I focus on what MS has taken, it doesn’t feel good. If I focus on how my life is better today than it was before I was diagnosed, I feel better.
I’m trying to rewire my brain and my automatic responses to be thoughts and comments that help me feel good about myself. It helps me to notice where my thoughts aren’t serving me in a way that encourage, motivate or inspire me.
Just in everyday living, I aim to be intentional about my word choices. The word diet feels like punishment to me. I replace the word diet with nutrition, sustenance, food choices and delicacies. My food choices are somewhat restrictive given food sensitivities. I’d love to lose a few pounds, but I try to think of it as respecting my body by making nutritious food choices. Some foods are sustenance, and some are indulgences. I’ll avoid foods that don’t sit well with me. And when I choose to eat them anyway, I’ll refer to it as feeding my soul so that I can stay on track. Will power, restriction and fear don’t keep me making the food choices I’d prefer long term. I need to allow for indulgence periodically to maintain overall good health.
When it comes to physical fitness, I avoid saying I need to exercise. Exercise connotes punishment and dread when I hear the word. Instead I write “daily fitness” on my to-do list. I aim for a mix of stretching, strengthening and improving endurance. I’ll say I need to be outside and active when I’ve felt I’ve been too sedentary.
For me, the language I use influences how I feel immensely. If I can frame things in ways that entice me rather than shame me, I’m more likely to act on them.
In the last year, I felt like I was getting a lot done, but I also felt like I was coping. I’d really like to shift my thinking to feeling like I’m maintaining and thriving. Making a fresh start is a perfect time to lose what doesn’t help and build what does. How I talk to myself is a terrific way to start.
Sunday, December 16, 2018
I love family traditions. They’re unique to each family, and they bond us to each other. Sometimes it isn’t until we’re older that we realize there are other ways to celebrate. It’s also not until we talk to each other that we realize traditions we love may not be universally liked.
Throughout my youth, Santa always included an orange in the toe of my Christmas stocking. As an adult, I feel like the holiday is incomplete if my goodies are missing the orange. When I peel the fruit and eat it among chocolates and candies, I feel connected to my parents and our Christmas morning celebrations from decades past. I told my sister this a few years ago, and I learned she didn’t share my fondness. She not only disliked it, she had a passionate resentment that produce took up valuable real estate in her stocking. As an adult, Santa accommodates her distaste for it by leaving a chocolate orange instead. The fact that she still receives a type of orange in her stocking reveals an appreciation for tradition with a creative adaptation to the portion of it that didn’t bring her joy. I think this perfectly showcases an approach we can use when family customs or expectations start causing us stress.
A common challenge during the holidays is accommodating seeing all of the people in our lives we care about. With evolving families and distance, it can become impossible to continue them without someone feeling slighted or stressed. With age and health issues, our endurance to do and participate in all we’ve done in the past may no longer be feasible. I think this creates perfect opportunities to shape our family traditions in ways that please us. At a minimum we can attempt to satisfy our needs and accommodate our health. Being flexible offers increased opportunities to connect with people we care about.
Some friends and family members will be disappointed when they no longer can expect your attendance as they have in the past. Hopefully they can be disappointed without anger or resentment. I try not to be one of those people who cause others to feel bad. My mantra is “invitation not expectation.” I’ll invite loved ones to get together at times that are convenient for all of us. If we can’t get together in December, we’ll make it happen in the new year. If I expect them to sacrifice to a point of personal detriment, we’ve lost the purpose and joy of the season. It’s not neglect or martyrdom on my end; I think of it as leading by example. With my health issues, I need to accommodate my energy level and life obligations. I hope they’ll appreciate my inability to do everything is not for lack of love. I hope they’ll also be responsible for their own health and well-being.
I try to find alternative ways to celebrate and preserve the core of our family traditions. I consider the holidays as an extended weeks long celebration. Celebrating in person the weekend before or after the actual holiday can be less stressful for everyone. We’ve alternated years to celebrate holidays with each side of the family. Giving plenty of notice so everyone can plan and look forward to “their year’s celebration” helps soften the blow. In off years, opening presents by video chat can be pretty special. If I won’t see them in person on the actual holiday, calling or texting helps keep us feeling connected and loved.
Reminiscing is one of the best ways to connect family generations and glean the seed of family traditions. Sharing stories and memories that siblings may have forgotten can bring forth bursts of joy. Disclosures of the “rest of the story” can bring revelations possible now that time and age have changed our family dynamics. Some stories are cherished as we reminisce about those that have passed away. These stories are especially perfect for sharing with younger members who weren’t afforded as much time with those loved ones.
Traditions can be great, but when life changes they might not serve us anymore. When they become burdensome or obligations leading to stress or resentment, it kills the joy. If conflict results, it’s worth finding the core feeling or connection from that tradition that’s worth preserving. It helps to be intentional about what we choose to continue as is, what can be adapted and what can be lost for good reason. Our unique family traditions bond us to each other, and being a part of creating new traditions can strengthen family relations. It’s worth the effort.
Wednesday, November 14, 2018
In wellness circles, we focus a lot on trying to reduce, offset, and avoid stress. It sometimes seems like feeling anxious or overwhelmed is perceived as a deficiency in our ability to handle life. I’ve come to believe that certain life chapters and physical conditions are inherently stressful and completely outside the limits of what any well-adjusted, positive and active person can live through without physical consequence.
I once heard that moving is among the most stressful events in a person’s life. Add changing my job, separating from a long-term marriage and living with a chronic illness to this life chapter, and it was stressful. Sure, it seemed less stressful than staying married, staying in my old job, maintaining my previous home and living with the same chronic illness, but it was difficult. I think it would have been unreasonable to think that I could breeze through so many changes without my body revolting or at least letting me know it’s not operating at full capacity.
Multiple Sclerosis is among the many health conditions that can drastically worsen with chronic stress. I saw it firsthand when my fatigue level skyrocketed and my normally manageable symptoms affected my activities and abilities. I hoped these conditions were temporary, and I knew that I was building a better future. I didn’t know if my health would improve after these life events passed.
It was natural to beat myself up for letting things get to me, but I tried to keep telling myself that I was coping well. It wasn’t a character flaw to have stress affect me physically. I can exercise, eat healthy, do yoga, meditate, talk to friends and counselors, journal and combat stress with every tool in the toolbox, and some things are just too much.
I kept anticipating the completion of events that would eliminate certain things that were stressful. After milestone events occurred, I was asked if I’m feeling great with what felt like an expectation of agreement. Honestly, I wasn’t feeling it yet. I couldn’t flip the switch from feeling stressed and anxious to feeling ecstatic or joyful. There was a sense of relief, but it also came with a bit of sadness for having to live through extremely rough patches. There was grief for things turning out differently than I’d hoped leading me to think, “now what?”
I would’ve thought that once a stressor is over that there would be positive energy, a sense of calm and generally feeling better. I’m learning it’s usually a rough time for me. My fatigue level can actually go up when life demands lessen and I’m able to slow down. All of the time spent dealing with stressful circumstances is now open. While it was eagerly anticipated, it can leave a void in the routine. Frustration for experiencing residual effects can last a while. It’s occurred to me that allowing myself time to recover from chronic stress is a necessary step.
During this recovery time, it’s an arc of relief where the feeling of stress gradually lessens and a sense of empowerment builds slowly. It takes the time it takes, and I need to not pressure myself to feel any differently than I do. I can however do things that will set me up to feel better when I’m ready.
- Mark the occasion. Making it to milestone events is worth rewarding.
- Assume it might take time to transition emotionally and physically.
- Find something to look forward to that excites and motivates. It might even be great to refocus if a distraction is needed.
- Spend time with people I care about and who care about me to celebrate and move on.
- Find the humor in my situation. Laughter provides relief at a cellular level. I don’t have scientific proof, but I can feel it.
- Be patient with my feelings. I’m not required to feel differently on anyone else’s timeline.
- Be as compassionate with myself as I would be for someone I love.
Sunday, October 14, 2018
I wrote a guest blog for Northern Lights Life Coaching by Kate Olson, "Weakness, Wisdom & Finishing Strong." I was truly honored when she asked me to submit something on a topic I’m passionate about. It was posted this month, and I hope you’ll follow the link to read it on her site. I decided to write about how I try to make decisions – first looking at whether I’m coming from a place of fear or strength in assessing my situation and options. I’ve provided this advice to friends making tough life decisions, and they’ve said it really helped them. It always helps me gain clarity for the best option for me to pursue. I’d love to hear your thoughts!
Saturday, September 29, 2018
Living with Multiple Sclerosis, I find I repeatedly need to accept my diagnosis and reality. I have moments where I feel great and totally at ease with my health, life and possible future decline. Other times I have symptoms ramp up, and frustration and fear can leave me rattled.
I’ve been living with my diagnosis ten years, have likely had MS at least another 15, and have accepted my MS diagnosis. Unfortunately, it’s not a one-time event or accomplishment. Friends who were diagnosed 20 and 30 years ago also periodically need to adapt to changes in health and abilities and accept things are different than they’ve ever been. I find the process of encountering challenges, adapting, and coming to a place of acceptance is a life skill that we use repeatedly. Sometimes it’s easier and feels seamless, while other times the challenge is harder and the process takes longer.
If I compare myself to people with terminal illnesses or living with disabilities far more limiting than my own current condition, I’m grateful that I am still active and quite capable. When I’m not feeling great and I compare myself to people that appear to be healthy, active and without any illness, I sometimes feel sorry for myself.
A book I once read described how a person with MS went to a rehabilitation center for people with all types of issues. The people who were para or quadriplegics due to injuries were deemed better off than people with MS, because their trauma and damage was done. The people with MS would continue to experience disease progression and decline in health and mobility at an unknown rate. I appreciated hearing that perspective, since the fear of the unknown and inability to prevent probable decline is an added mental burden to conquer. I’m thankful medications to slow MS progression exist, but I’m not arrogant enough to think it will prevent my decline. I am hopeful that myelin repairing medications will be developed and will someday be available to us. I hope this is in my lifetime, but I anticipate it is more likely to benefit those that come after me.
I’ll compare how I’m doing with others, and I’ll appreciate that my health is still highly manageable. I’ll be thankful that I’m able to do so much still given MS has done a lot of damage. To me, the result is that I have an appreciation for their struggles. I make it clear to others that I don’t know their hardships. I merely feel a kinship to them and wish them well.
I do feel like I’m experiencing bodily issues that may come with normal aging, but I have them 10-20 years younger and for a different reason. Often people will respond to an issue I’m having with, “You’re too young for that!” They’re right. Yes, I would be too young for that if I were a healthy person without a chronic illness. But I have MS, and that means I’m lucky my problems aren’t worse. I may actually have been staving off these issues longer than other people with MS have.
I think it's normal and even pretty difficult to avoid comparing ourselves to others. I think it's what we do with that mentally that matters. If I can build kinship and compassion with others instead of feeling resentment or self-pity, it builds a sense of gratitude and provides a reality check that helps me cope with my own condition. Feeling compassion for others can help us build compassion for ourselves, cope with MS, and accept our condition.
When I see others living seemingly without any health limitations, I try to remember that I too used to think I was as healthy as a person for my age could be. I was very active with early morning workouts, running competitive races, and doing gymnastics through my late thirties. In hindsight, I can see that I was living with MS for at least 15 years while experiencing relapses that I chalked up to normal aging, stress and health issues. This reminds me that people we know may be living with as yet undiagnosed conditions like heart disease, cancer and/or autoimmune diseases.
Whenever I think during a race or fitness class that doing this is harder for me than others and no one else knows what I’m going through, I try to remember that they may be living with and overcoming unseen challenges too. It reminds me to just do my own thing and push myself at a level right for me.
I think whether we think someone else’s condition would be better or worse than ours really depends on each of our levels of resiliency, biology, approach to life and sense of self. One person can feel depression and not make it through, while another can experience similar circumstances or diagnosis and find a greater sense of purpose. Boosting our coping strategies is necessary to live with and possibly thrive with chronic illness. Strong personal relationships and sense of place in social, community or religious organizations help us live beyond our own thoughts. A network of medical care providers with a counseling component can address our physical and mental health needs as they change. Finding a sense of purpose that extends beyond our physical or cognitive abilities can help us accept declining health as best as possible.
I think it’s great to look to others for suggestions, inspiration, motivation and connection, but I think it’s necessary to value our individual strengths, weaknesses and preferences in order to find our own path toward acceptance and purpose. It helps to look around, and it’s crucial to look within ourselves. Often our best path forward isn’t following someone else’s, it’s the one we create for ourselves.