Hearing the words “you have MS” hit me hard when I got my diagnosis. My first thoughts went directly to how it would affect my boyfriend and our relationship, how it would affect my family, my friends, my career and work. The thing I didn’t think about in that moment was how MS would affect my relationship with myself.
Sure, I spent some time totally freaking out over how MS was going to affect me physically; by then I had already lost the feeling and use of my legs. But it was specifically 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 at a time. 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: gone. My career: also gone. I had moved back in with my parents. All the outside things that I used to validate myself and my worth were gone.
I looked in the mirror and thought to myself, “Girl, what the heck has happened?”
But in 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, it was going to spiral.
The first step for me was to determine who I was now, with MS, and to make peace with it. I couldn’t be mad at MS; it was a part of me, and it 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 to reflect on all the good things that 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 didn’t stop sharing my voice. I overcame many fears, from small ones (of needles) to big ones (of becoming invisible). I was alive and 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 next morning 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 that describes reasons why you are fabulous that have nothing to do with MS. With MS, some of the things on my lists 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 also good to see how powerful I was in my fight with MS, but also how great I was regardless. Both perspectives are extremely valuable.
Be kind to yourself
Things are going to change with MS — including your body and your abilities — even if it’s just in the slightest way. Try to not be overcome with it. Talk kindly to yourself, and use gentle words. Don’t criticise yourself. Take a breath before you think anything toxic. You are doing a wonderful job. See the lists above for proof.
Take time to invest in self-care
You can’t control a lot with MS, but you can control the ways in which 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 where 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. For me, it helps to battle the feeling of being useless in the things that I cannot control. It’s the thought: “I can’t do much about the demyelination that’s happening in my body right now but heck, I can have great skin.” It seems small, but for me it’s a great empowering move.
Detoxify your space
If there is a particular thing that causes you to question your self-worth, remove it immediately. Whether it’s something on social media or 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 normal 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, and to use it wisely when I do log on. Why tempt bad thoughts?
Find tools and modifications to do the things you love
For me, one of the hardest challenges with self-love and MS is feeling like less of a person due to disabilities. I’ve found that physical and occupational therapy has been a huge help in getting over that hurdle. These therapists have listened to my frustrations, helped find the pain points, and helped me find aids and adaptations to get up and running… Well, maybe not literally, but definitely moving.
This includes things like a handicapped 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 just might need some tools.
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. For me, that included not beating myself up for getting up at 10 a.m. because I knew my body needed the sleep. Or allowing myself to say “no” to things that I know will drain my energy. Or by learning how to advocate for myself 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, but in fact I’ve walked all over the world — mostly thanks to adaptations. If I had been passive, I would have nodded and accepted. Instead I pushed my limits and made my own rules: try, try, try again. And here I am, succeeding.
You have to find what works for you, and there are professionals who can help specifically with this: doctors, therapists, counsellors, coaches. But at the end of the day, the decision to look in the mirror and say, “Oh, you are a babe” is up to you. It’s a relationship you have to choose, invest in, cultivate, engage, and grow with. 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.
My own hope is that, one day, everyone with multiple sclerosis will feel like the confident, strong, powerful people they are. That they’ll approach the world with a smile and a hair flip, saying, “I’m here. I’ve arrived. Let’s live this life with MS.”
UK/MED/18/0331 December 2018