Finding My Purpose - Part One

I recently completed a six-week MS research study, and honestly, it was incredible. It was a small group of women with MS who met via Zoom once a week, and the goal of the study was to explore how rebuilding a sense of purpose may enhance quality of life for people living with multiple sclerosis. Over the six weeks we talked about identity, values, strengths, barriers, connection, contribution, legacy, and what purpose can actually look like when your life and your body may look very different than they once did.

At the end of the study, this was the purpose statement I came up with:

In this season of my life, my purpose is to live authentically and compassionately, using my creativity, empathy, and ability to plan and adapt to support others and help them feel less alone. I want to stay connected to the people I love, continue learning about myself and MS, care for myself and allow others to care for me, and find new ways to make a meaningful difference, even when those ways look different than they used to.

I absolutely did not have that figured out when we started. The first three weeks were really about digging into who we are, what matters to us, what strengths we still have, and what the barriers in our lives might actually tell us about our purpose. Because I have a lot to say about this study and what I took away from it, I am going to break this into two parts. This first part will cover Weeks 1–3, which the workbook describes as building the foundation. Weeks 4–6 are about taking that foundation and figuring out how we actually live our purpose through connection, contribution, legacy, and daily life.

Our first task was to identify some of the identities we hold and which of them feel most threatened or have been changed by MS. For me, I listed the Helper, the Empath, and the Hard Worker/Perfectionist.

The Helper: I have always been the helper and the glue in my relationships. You need help moving? I am there. You had a bad day? I am showing up with baked goods and potentially alcohol. You need a shoulder to cry on or someone to vent to? It’s me. Showing up for others has always been a huge part of who I am and how I express love and kindness.

The Empath: I am always empathetic and working to view the world through the eyes of others and through perspectives that are foreign to me. I want to understand why people feel the way they do and move through the world with kindness, compassion, and understanding.

The Hard Worker/Perfectionist: I like to be amazing at everything I do. I give 150% always. When I learn something or start something, I go all in. I am very much an all-or-nothing person, which has served me very well at times and has also been incredibly inconvenient since becoming chronically ill.

If I had to rank which of these identities has felt most affected or threatened by MS, I would say the Helper first, then the Hard Worker/Perfectionist, and then the Empath.

Something we discussed during this week that really stuck with me was the importance of separating our identities from our roles. They are absolutely tied together, and pieces of our identities often show up through the roles we have. The Helper might show up through being a mother, teacher, nurse, employee, spouse, friend, or caregiver. The problem is that roles can change or disappear. Your kids grow up, you retire, you lose your job, you become disabled, or your life changes in some other massive way. When that happens, it can feel like you have lost that piece of yourself along with the role.

But you haven’t necessarily lost the identity. The role was just one place where that identity had somewhere to live.

I think this is such an important exercise for everyone, not just people with chronic illness. If you strip away your job title, your relationship to other people, and the things you physically do every day, who are you? What parts of you exist underneath all of those roles?

For me, learning how to be the Helper in my new body and my new situation has been incredibly difficult. Showing up for others is who I am, and there are so many things I used to do without thinking that now take an absurd amount of forethought and planning.

Baking is a great example. Previously, the only planning I really needed to do was figure out whether I had the ingredients and, if I didn’t, go to the store. Now I need to consider whether I am having a good symptom day, whether Adam is home to help me, whether I need to order groceries, what the weather is like because if it is too hot and I turn on the oven I am going to become more symptomatic, and whether the recipe freezes well. Ideally, I need something where I can freeze the dough or the finished cookies because when someone actually “needs” baked goods, there is absolutely no guarantee that my body is going to cooperate that day.

When I first wrote a variation of this down during the study, I was extremely upset. I remember thinking, how in the hell is this my life? Something as simple as making cookies for someone now requires a contingency plan.

But as we moved through the study and I thought more about my identity and my values, I started seeing that example completely differently. All of that work to make cookies is actually so incredibly me.

I am thinking about the needs of someone else and what they are going through. I want to brighten their day with a baked good. I am using planning and adaptability to figure out how to do that within the limitations of my body. I am putting in the work to take care of the people I care about, and even though my capacity is completely different, I am still giving my 150%.

Something that originally felt devastating turned into this weirdly beautiful expression of the identities I thought MS had threatened. There are absolutely things I used to do to help others that I am no longer physically capable of doing, and there is real grief in that. But the Helper, the Empath, and the Hard Worker/Perfectionist are still here. They just have to find new ways to be me.

One of our exercises after this was to spend the week noticing meaningful moments and thinking about why they mattered and how they connected back to our identities. I liked that the point wasn’t to manufacture these huge meaningful experiences. It was really about starting to notice the small moments that already exist and recognizing what they tell us about who we are.

Week Two focused on our values and strengths. The workbook gave us a large list of values and asked us to identify the ones that mattered most to us. I selected compassion, connection, respect, creativity, justice, kindness, learning, wisdom, growth, helping others, honesty, joy, and love.

When we discussed our choices as a group, it was really interesting to see how different everyone’s answers were. I was absolutely the youngest member of my group and I believe the only one without children. One of the differences that stood out to me was that most of them chose family, and I did not.

Now, I love and adore my family. However, “family” itself doesn’t really fit into my values. I value respect, love, growth, and justice above almost everything else that I listed, and sometimes one’s family isn’t always capable of those things. Being related to someone doesn’t automatically make a relationship good or meaningful. I value the people who show and embody respect, love, growth, justice, compassion, and kindness. Sometimes those people are family, and sometimes they aren’t.

On a completely separate tangent, I also didn’t select friendship because honestly, what is adult friendship and when did we stop giving a shit about one another?

I grew up watching sitcoms, which I am aware are not real life, but one of the things that always stuck with me was that those people were there. They were there for one another during the good and the bad. They talked. They shared their souls and their lives. For the How I Met Your Mother fans, I always think about Ted sitting with Marshall in the rain after Lily left. Again, it is a television show and they were roommates, but why is it so hard to find even a fraction of that in another person as an adult?

Anywho, moving on!

The other half of the week was focused on strengths. I chose adaptability, acceptance, authenticity,  caring, compassion, determination, empathy, generosity, kindness, listening, planning, problem solving, resilience, emotional strength, thoughtfulness, and willingness to learn. We were asked to narrow the larger list down and eventually identify the three strengths that felt most core to who we are.

For me, those were empathy, authenticity, and resilience.

Narrowing that list down was surprisingly hard, and honestly it made me really emotional. When chronic illness strikes, you become incredibly aware of your shortcomings and the things you can’t do anymore or have to do differently. So much of your time is spent thinking about what hurts, what you need help with, what you can’t access, what you forgot, what takes more energy than it used to, or what your body simply refuses to do.

Seeing this whole list of strengths that I could still identify in myself while I was sitting in my pajamas, on my couch, looking like a hot mess, and on pain meds was honestly magical and healing. These weren’t things I used to have before I got sick. They were things I still had right then.

The workbook also had us spend the week looking for our values and strengths in action and asking ourselves what we learned about what matters to us. I really liked this because the whole idea was that meaning is built through daily choices. It wasn’t about accomplishing something huge. It was about noticing even small ways our strengths still show up and shifting some of our focus from our limitations to the possibilities that are still there.

During this exercise, I also acknowledged some areas where I want to grow. These were things I was already aware of before becoming chronically ill, but they are especially relevant now. The main three were assertiveness, bravery, and self-compassion.

For me, assertiveness and bravery are kind of tied together. Setting boundaries and making sure that my needs are met have never been a priority or a strong suit, but now they are a necessity. As much as I hate it, I need help. I am not independent. I am not self-sufficient. Having the courage or bravery to set boundaries so I am not taken advantage of, while also speaking up and asking for help when I need it, are things I hope will eventually become genuine strengths.

One of the ways I am working on assertiveness is by refusing to shrink myself or automatically move out of the way for other people. Even before needing a wheelchair, I would move and take up as little space as possible, and I think this is something a lot of women do. A great example is when a woman is walking down the sidewalk one way and a man is walking the other. Who is more likely to move?

NO MORE!

It is physically harder for me to stop and takes significantly more energy when I am rolling to stop and start again. I now refuse to automatically move or stop for groups taking up the entire sidewalk, and you can bet your ass I will fight my way on and off the curb cut. It seems like such a small thing, but for me it is part of learning that my needs are allowed to take up space too.

The final area I felt needed work was self-compassion. Honestly, before chronic illness I probably would have considered this a strength, but what bumped it back down is that I am a stubborn gal who will absolutely push herself when she should not. Sometimes I do it for myself, but more often than not I do it for others.

I NEED to stop.

The people in my life who see me regularly know me and know my situation. Being “on” when I am exhausted and in pain isn’t always necessary, and when I force myself to do that anyway, I am not being kind to myself. I do think sacrifice is necessary sometimes because that is part of being in a community and having people. Sometimes you show up when it costs you something because you love someone and they need you. But I can’t do that every day. I don’t need to do it every day. No one expects me to do it every day.

I am still very much in the process of learning to pause, listen to my body, and take care of myself and my needs.

Ouch! Am I right? What a kick-in-the-pants quote.

Honestly, even before chronic illness this would have been a kick-in-the-pants quote. Before all of this happened, I had a job that I realize now didn’t really align with my purpose. Now, I don’t think everyone get to have a job that aligns perfectly with their purpose. Sometimes you take the job because it funds the things you love and gives you the ability to pursue your purpose elsewhere, which is largely what I had done. But I also didn’t really know what my purpose was. I was working for the weekend.

Past existential crisis aside, this week we looked at the barriers standing between us and our purpose, which, with MS, was a fairly substantial list.

For me, I selected fatigue, cognitive challenges, mobility, pain, sensory overload, heat/cold sensitivity, vision issues, numbness/tingling, frustration, bowel/bladder issues, isolation, time, transportation, finances, household responsibilities, access to care, self-doubt, perfectionism, feeling “not enough,” and grief.

Hell of a list, isn’t it?

However, while the barriers absolutely suck, one of the ideas from the workbook that stuck with me most was that barriers don’t block our purpose, they reveal it. When something is particularly painful or difficult, it often points directly toward something we value or a strength we rely on. Instead of only looking at a barrier as something standing in our way, we were asked to think about what that barrier reveals about what matters to us.

For me, work was a perfect example.

I was laid off, but even if I hadn’t been, I would have had to leave anyway because of my health and honestly, should have left sooner. When I lost my job, I felt like I lost a piece of myself. But through this study I realized that I didn’t actually lose that piece of myself. What I lost was a role.

My favorite part of my job was helping people. I made sure people could have their meetings, communicate, collaborate, and share what could potentially be world-changing work. Helping was the piece that mattered to me. My job was simply one way I had been able to express it.

Losing that job didn’t take away my drive to help others. I am still the Helper. It just looks different now.

In fact, I took that loss and not too long after started this blog. I can’t help people at work anymore, but I can share my life, my experiences, the things I learn, the accessibility tools that help me, the ridiculous parts of chronic illness, and the really hard parts. Maybe someone newly diagnosed finds something I wrote while frantically Googling and feels a little less alone. Maybe something I learned after fighting through a process saves someone else some time or energy. Maybe talking openly about something embarrassing makes someone else realize they aren’t the only one dealing with it.

If I can help even one person that way, I am still helping.

From barriers, we moved into actually beginning to build our purpose statements. The workbook broke the process down in a way that I think explains the entire first half of the study perfectly:

Barriers help us see what hurts and what matters. Values help us understand why it matters. Strengths help us see how we move through it.

Then purpose helps us decide who we want to be next.

This was definitely the turning point of the program for me. I took all of these things I had dug up within myself over the first few weeks and suddenly had the opportunity to take some of the things that hurt the most and use them to understand my purpose instead of only seeing them as losses.

That doesn’t mean the barriers aren’t still barriers. Fatigue still sucks. Losing independence still sucks. Grieving things I thought my life would look like still sucks. Figuring out a deeper meaning behind something doesn’t magically make MS inspirational or make me grateful that it happened.

But it did help me separate what MS has changed from who I actually am.

I lost roles. I lost abilities. My capacity is different. The way I move through the world is different. But the things underneath all of that, the Helper, the Empath, my values, my creativity, my ridiculous determination to give 150% even if my 150% looks completely different now, are still there.

The workbook ends Week Three by saying that the first half of the program is about building the foundation and that the second half is about building the future. That is exactly what it felt like.

Weeks 1–3 helped me figure out what was still there underneath everything MS had changed. In Weeks 4–6, we started asking what I could actually do with it. We talked about connection and contribution, what it means to leave a legacy, and how purpose can act as both a compass on good days and an anchor on the really shitty ones.

And that is where my final purpose statement really started to come together.