Multiple Solutions
Tips and perspective on overcoming the fear of having MS (or any chronic disease).
Inspired to write this piece after an interaction on IG with a young woman newly diagnosed with MS. She was feeling sick with a cold (which can flare symptoms) did a lot of walking, and had just begun a new medication. By my observation and her sharing, she isn’t very active all of the time. At the end of her day, her leg/foot felt “weird”. She called the nurse (medications offer support via nurses that you can call anytime, it’s great) to ask for her advice, wondering if this was a symptom of her MS. The nurse confirmed that it was most likely her MS.
My heart sank for her. Not because she was experiencing a symptom of MS, but because she lacked the education and awareness to look at the issue from a different perspective. All she had was MS. And I get it, I’ve been there. But this “weird” feeling could be coming from so many other sources. I wished in that moment I could explain all this to her. I tried, but a short message on IG won’t cut it. So here we are.
I've talked with many people newly diagnosed with MS, including myself. Everyone has a different story, but we share similar experiences, symptoms, and emotions while figuring out the diagnosis and journeying towards our healing.
One common and prominent emotion is fear, fear of the unknown. Fear that your body may give out on you. That you may lose your ability to walk, to be autonomous, to be mobile. Fear of any bodily sensation that is out of the ordinary, or any sensation for that matter. Fear that another attack may occur, a relapse in disease just moments away at any given time. It's a challenging and stressful state, a major hurdle for those diagnosed with MS to overcome.
Upon diagnosis, thoughts spiraled through my mind daily, a constant nagging, is this my MS? Am I having another attack? Every sensation out of the ordinary would trigger a moment of panic—a pause in my heart, a held breath. I'd second-guess myself, questioning what was truly ordinary. Was this a new sensation, or had I just not noticed it before? I became hyperaware of every nuance in how my body felt, in a perpetual state of high alert. This heightened sensitivity became my new reality after the diagnosis.
At times, it felt like walking through a mind field in the dark- at any moment a relapse could occur with no warning or explanation. In these instances, feeling unsure of what my body was telling me and scared for what it might do, I’d turn to the professionals, others with MS, the Internet, or remain with my own thoughts until I could slow the spinning and talk myself down.
These moments were very challenging at times, testing my mental strength. I wish that I could say they never happen now, but that wouldn’t be the truth. Still, 17 years later, moments of fear seep in. But slowly, over time, those moments become very few and far in between and are very mild in totality.
It takes time to cultivate a healthy relationship with your body, understanding their language and needs in relation to your overall well-being. Prior to my MS diagnosis, I treated my body as a passive companion, oblivious to her inherent requirements and unique communication style. It was my world, and my body was merely along for the ride—until she wasn't. The joke was on me. 😉
For years, my body spoke, but there was no one to listen. Her subtle signals, attempts to capture my attention, all went unnoticed. Worse yet, if not totally ignored, they were dismissed as unpleasant nuisances. How dare my body disrupt my life? How dare it seemingly disregard my needs? I treated her like a machine designed solely for my use, neglecting to care for her in return. I used her without replenishing her. My body craved communication so desperately that she literally flared up. What began as small cries turned into screams. Yet, the lines of communication remained stifled, muted, plugged up, and turned off. So, my body screamed louder. And louder. And even louder until I finally listened.
My diagnosis opened me up to the universe of my body. What a gift. A gift that came in an unpleasant package, yet still a gift nonetheless. It would be the light at the end of the tunnel that would lead me through the darkness in more ways than I could ever imagine, time and time again.
Today, even if the darkness pops up, my faith in my body and being illuminates my path. This faith instills a deep knowing, an assurance that everything will be okay. This knowing brings me grace that allows for surrender. Through surrender, I find the space to be okay with myself, even in the midst of darkness and discomfort. Because ultimately, within that space, new light emerges—an opportunity to "see" my path once more, to move forward with greater resilience than before.
Early on, when you really don’t know anything about your body and how it functions, it’s very hard to feel empowered and most often it feels scary, urgent, and overwhelming when you’re still amidst a relapse or being newly diagnosed. You rely on the help of the experts around you only most, if not all, of those experts have never experienced MS. They’ve never felt what it’s like to have an episode, to be in the body of someone with MS. To hear the words “you have MS”. Furthermore, many don’t know their body either. They too are disconnected. They too have missed the calls from their body.
Many smart people have assisted me, but none of them had MS. I'm not downplaying the expertise of professionals or saying only someone with MS can help-many have helped me tremendously that don’t have MS. I just want to emphasize the value of firsthand experience. Of gaining confidence in the body of knowledge that you hold. Of building your body confidence and awareness so that you can take back your power.
Do not negate your body of knowledge. If you have been diagnosed with MS, you are a body of knowledge. Literally. Your body holds knowledge. Your experience with MS matters. What you feel matters. And while science, protocols, and studies are important, practice and experience are equally important. It’s so important we share our stories. Our stories of triumph and tribulation.
To feel more confident in the dark, reconnect with your body. Begin by delving into the unknown. Learn everything about your body in a way that makes sense to you practically. Understanding the why and how behind things is incredibly empowering. It enables you to actively engage with the challenges, making you not just aware of the problem but a participant in finding solutions. Being part of the solution is crucial for healing.
So the next time your body feels “weird”, your leg feels tingly, your muscles feel weak, you feel nauseated, off balance, fatigued, foggy, and more, panic won’t set in. You might find some solace in looking for solutions outside of MS (or whatever crazy Google diagnosis you’ve given yourself). Getting to know my body, I've realized there was a lot I was missing before and even after MS. I was quite disconnected and unaware.
Our bodies are so dynamic. Constantly in flux. There are so many reasons you can have the above symptoms that don’t include a relapse, new attack, or disease. And in the unfortunate event that it is a relapse or new attack, you have better prepared your body - mind and spirit too - to overcome the setback by reconnecting with your body. Learning them from the inside out. What supports them? Disrupts them? How do you restore balance? Increase vitality? Strength? Free them of pain? Ultimately, how do you care for your body and wellbeing?
Learning about your body will empower you. I can’t say that enough!! If you are struggling with MS, dive deep into the learning of your body. Get to know them. Build a relationship with them so that when they speak to you, it doesn’t sound like a foreign language leaving you reliant on someone else to translate. You be your own translator and seek guidance and assistance when needed.
If you are new to being in your body and don’t know where to start, try these things.
One of my favorite mantras and a message to your body:
In either a seated position or lying down, place your hands on your body and repeat “I’m sorry I have been disconnected, but I’m here now.” as many times as you’d like.
Try your own private savasana while listening to this song:
Learn about your body. Invest in apps, books, and other resources that can help you better understand and visualize the inside of your body. You don’t need to become an expert overnight, simply begin the learning process.
I love this app: Essential Anatomy 5
Take a course in movement or nutrition - any course! There are so many to choose from, long and short form. Even if you don’t intend on becoming a coach or a movement teacher, many of the trainings are useful simply to learn more about your body. I loved my year of online learning with IIN in nutrition and completed my Pilates training with BASI. There are so many yoga certifications, I suggest asking a teacher that you really love where they got their certification.
Book a private session with a skilled practitioner that can help you better understand your body. That can be a Pilates or yoga teacher, massage therapist, physical therapist, acupuncturist, structural integrationist - to name a few.
If you know anyone who is struggling with MS, please share this email. It takes a village to heal and together we can create that village.
