Navigating Your Most Important Relationship with MS: Yourself

The one with yourself, of course!

Hearing the words "you have MS" struck me hard when I got my diagnosis. My first thoughts went directly to how it would affect my boyfriend and our relationship and my family, my friends, and my career. I didn’t think about how MS would affect my relationship with myself at that moment.

Sure, I spent some time freaking out over how MS would affect me physically; by then, I had already lost the feeling and use of my legs. But it was explicitly the relationship with myself, what I’d say to myself when I looked in a mirror, that I didn’t think about.

That hit me about a year into my diagnosis. I had spent most of that year in and out of hospitals for months. My body looked different. My hair was thinning. My skin was grey. I was walking with arm crutches and using a wheelchair for long distances.

The relationship I had with my then-boyfriend had effectively disintegrated. Some of my closest friends have gone. My career has also gone. I had moved back in with my parents. All the outside things I used to validate myself and my worth were gone.

I looked in the mirror and thought, “Girl, what the heck happened?"

But at that moment, something changed. My inner superwoman perked up — I knew then that I would have to dig deep and invest in myself because, otherwise, I would spiral.

The first step was to determine who I was now with MS and make peace with it. I couldn’t be mad at MS; it was a part of me and wasn’t going away. But I also didn’t want to be known as “that girl who has MS.”

I knew that I had to change the conversation about my new life, and to do that, I had to change my perspective. Instead of being the girl with MS, I was going to be the girl who LIVES with MS.

I started reflecting on all the good things I had accomplished over the year: I had relearned to walk after months in inpatient rehabilitation. I was patient as my speech was affected by dysarthria, and I didn’t stop sharing my voice.

I overcame many fears, from small ones (of needles) to big ones (of becoming invisible). I was alive, thriving, and beautiful — I just needed a lot of naps.

But how, specifically, did I do this? Sure, you can have a great night and talk yourself up at 3 a.m., but we all know that when we wake up the following day, we’ll be greeted by the same disease and issues. How do you build yourself up while you’re fighting the fight?

Here are a few tips that helped me to fall in love with my MS self.

Take stock of your own awesomeness

To do this, make two lists: one that spells out why you are fabulous with MS and another with totally non-MS related reasons for what makes you awesome.

With MS, some of the things on my list were those mentioned above:

• walking again
• learning how to manage doctors
• finding ways to adapt so I could still do what I love

The list without MS included:

• my sense of humour
• my fashion sense
• my ability to make any gloomy day bright

This was a great way to reflect on what I bring to the table and how awesome I really am. It was good to see how powerful I was in my fight with MS, but also how I hold value as a person, regardless of my condition. Both perspectives are precious.

Be kind to yourself

Things will change with MS — including your body and your abilities — even in the slightest of ways. Try to not be overcome by it. Talk kindly to yourself, and use gentle words. Don’t criticise yourself. Take a breath before you think of anything toxic. You are doing an excellent job. See the lists above for proof.

Take time to invest in self-care

You can’t control much with MS, but you can control how you care for yourself. Your hair and skin might need some love after treatment (mine needed a hell of a lot!).

Take time to invest in your natural beauty. I keep a few easy-to-apply products in a basket that can be moved to my bedside. On days when life is just too hard, all I have to do is roll over, and three minutes later, I have dewy skin.

There’s also something to be said about doing the things you can control. It’s the thought: “I can’t do much about the demyelination in my body right now, but heck, I can have great skin.” It seems small, but it’s a tremendously empowering move for me.

What is demyelination? – Myelin is a material that makes a protective, “insulating” sheath around the nerves in your body. When you have a demyelinating disease – such as MS – this insulating coverage gets progressively more damaged, causing neurological problems.

Detoxify your space

If a particular thing causes you to question your self-worth, remove it immediately. Whether it’s something on social media, TV, or an actual friend, distance yourself from it. That doesn’t mean you have to swear off those things forever, but it always helps me to take a step back to regain perspective.

For me, it was Facebook. Seeing all my other friends continue to live everyday lives when I was "stuck" was just too hard; I couldn’t do it. So, I deactivated my account for a little while. Later, when I was a little stronger, I reactivated. That break also helped me to feel less attached to it. Why tempt bad thoughts?

Find MS-friendly tools and modifications to do the things you love

One of the most complicated challenges with self-love and MS is feeling as if I'm less of a person due to my disabilities. I’ve found that physical and occupational therapy has been an enormous help in getting over that hurdle.

These therapists have listened to my frustrations, helped me find the pain points, and helped me find aids and adaptations for getting up and running… Well, maybe not literally, but definitely moving.

This includes an accessible parking spot tag, mobility aids, and tools you can use at home (thank you, shower chair!). With the help of adaptations, I’ve been able to do all the things I still love: ride a bicycle (recumbent bicycle), attend concerts, go shopping, and travel the world.

You can still live limitlessly while limited. You might need some extra tools, that's all!

Be your own best health advocate

Now, I’m a realist. You can’t defy gravity, but you can push the limits and make your own rules. That included not beating myself up for getting up at 10 a.m. because I knew my body needed sleep. Or allowing myself to say "no" to things I know will drain my energy. Or by learning how to stick to my guns with my doctors.

Doctors are fabulous – I love doctors. But sometimes, I feel like they’d rather keep me in bubble wrap or in bed. I’ve had multiple doctors tell me I would never walk again. Despite this, I’ve walked all over the world — mostly thanks to adaptations I've been given or made myself. If I had been passive, I would have nodded and accepted. Instead, I pushed my limits and made my own rules: try, try, and try again. And here I am, succeeding.

The takeaway

You have to find what works for you. Some professionals can help specifically with this: doctors, therapists, counsellors, and coaches. But at the end of the day, self-love (or not) is entirely in your hands. It’s a relationship you have to choose, invest in, cultivate, engage, and grow with.

And, just like any other relationship, it doesn’t happen overnight. There are highs and lows. It’s not always easy. But over time, it becomes a part of your existence. It becomes a part of your life story. It becomes a part of you.

One day, I hope everyone with multiple sclerosis will feel like the confident, strong, influential people they are. I hope they approach the world with a smile and a hair flip, saying, “I’m here. I’ve arrived. Let’s live this life with MS.”

NPS-IE-NP-00657 December 2022