At the age of 29, I was diagnosed with Multiple Sclerosis (MS), an incurable autoimmune disease. My story is personal, and yet what I learned can be applied widely whether you are sick or just looking to optimize your health and well-being.
In 2017, I was going through a stressful period; working and traveling non-stop, always on the go and trying to get to the next level in my career and life. A sudden death in the family exacerbated stress to the point where I was barely keeping it together. Soon I found myself in the ER with a headache that had lasted for over a week and vision problems. I was rushed to the hospital for what was identified as Optic Neuritis, a swelling of the optic nerve that can lead to vision impairments.
At the entry point into the hospital, I had lost vision completely in my right eye. I was told it could be an early sign of MS, but they couldn’t be sure. After hours of CAT scans, MRIs, blood work, and five weeks of waiting, I finally got word that it was MS. Though my vision had cleared after the hospital treatment, I was starting to notice other symptoms, which made me increasingly unsure of my future.
A google search of MS will produce many horrible stories but dig deeper, and you’ll learn that the disease is like a fingerprint; every case is different and what is true for one person may not be for another.
The distinctions include severity, symptoms, and progression. MS has two categories: progressive MS and relapsing-remitting MS (RRMS). I fall into the latter category. While there is no cure, long term remission is possible.
What I have found is that most people with MS who are doing relatively well, keep their story close to their chest. I don’t blame them. They want to live a normal life. They don’t want the stigma of being “disabled” and having an incurable disease. They don’t want to explain MS, an especially tricky and complex condition that many people have preconceived notions about. I struggled with speaking publicly for these reasons.
I do not identify with being disabled. I do not want to be known for something that does not define me.
You will not find #MSwarrior on my social handles. While I long for a cure, going to charity events for MS does not feel personal for me, it feels like a nice thing we are doing for someone else. I decided to talk about my story as a cathartic way to get this secret off my chest and because I wish I had these guidelines when I was first diagnosed. I craved encouraging advice but what I found was a barrage of horrifying stories outlining what my future might bring. I write this with the hope that someone will find a piece of what I have learned helpful.
These are the most valuable lessons I gathered throughout my first year struggling to bring myself back to health…
1. Listen to your body
○ You always know best. Trust doctors, but go with your gut, no matter what. For months leading up to my health breakdown, I had dreams where I couldn’t see – not entirely, but my vision was partially gone. I would walk around my dream world half blind, trying to figure out why I couldn’t see. I knew my dreams were indicating something profound, but I couldn’t put my finger on it. Fast forward to months later when the vision in my right eye was gone, it all made sense. My body had been trying to signal what would happen if I stayed on the same path.
2. Manage Stress
○ I am a driven person, a perfectionist, and I wasn’t sure how “slowing down” would fit into my life. Before my illness, I was working and traveling nonstop. I had an idea in my head of what success looked like and who I needed to be. In hindsight, I realize my approach was making me sick and affecting my quality of life. No one on their deathbed has ever wished they worked more. Maybe it’s time to focus on what actually matters and find a sense of balance.
○ While exercise, yoga, and meditation are helpful for stress reduction, I learned that if we change the way we think about stressors, and put them into a broader perspective, the results can be just as substantial. Part of this comes from being faced with mortality, which reveals everyday stress for what it really it is: trivial.
3. Re-evaluate your perception
○ To truly shift the way we think about our reality, we need to switch our focus to what is essential in life. Will this matter in a month? A year? Five years? Most often it won’t and therefore is not worth your worry.
○ Identify what matters most to you and start to reshape your daily life around these priorities. Family, friends, creative expression, writing and helping others were on the top of my list. What are yours? Are you carving out time appropriately?
○ Remove the word “should” from your vocabulary. Either you need to, or you want to. That’s it. Try that for a day and see how much lighter you feel.
○ Nothing is guaranteed. Every day is a blessing and focusing on the good will allow you to live a more vibrant, fulfilled life.
4. Be your own advocate
○ It’s up to you to get a strong support team in place (family, friends, doctors, role models, etc.). Pick the people you want in your corner and those who lift you up when you’re down.
○ The significance of a positive attitude cannot be understated. I say this with the caveat that when anxiety and depression are present, they are not to be taken lightly and professional help should be sought. However, the CHOICE to come back to a positive outlook is a necessity. Let yourself have that crappy hour, day, etc. but then CHOOSE a bright future for yourself. Even if you don’t know how you will get there. Commit to it and find others who can help you on that path.
5. Focus on the good stuff
○ Hello whole, organic foods: I cut out the majority of gluten, dairy, and pre-packaged foods in my diet and added a ton of vegetables and whole, organic foods. The change in how I felt after making these alterations was astounding. These days, since I am feeling better and having less fatigue and physical symptoms, I am more lenient when eating out or preparing a special meal. Everything in moderation.
○ Bye, bye booze: Years ago, I made the tough choice to stop drinking altogether. Luckily, I did this before my diagnosis, so it was one less change to make. At first, this was challenging because of social norms that were hard to break. Now, 99% of the time, I don’t miss it. This was a very personal decision and others I know with MS still drink in moderation. Do what works for you.
○ Reduce toxins: I took a more in-depth look at what I was putting on my body and what I was using in my home. Shifting to non-toxic beauty and home products is a process but your health is worth it.
6. Ask for help
○ It’s okay not to be okay. The most frightening and brave thing you can do is ask for help. Not just from doctors, but from your family, friends, colleagues, even strangers. We all havea facade up that things are great,but most of us are going through something. If your mental health needs some TLC, take care of that first. It will make the rest much more manageable.
7. Put yourself first
○ You can’t fill other people up if your glass is empty. This is not a selfish act, it is a necessity. I took my health on like it was a full-time work project and I learned to say no (quite often) to things that didn’t align with my health needs.
8. Practice patience
○ Everyone’s mind and body are unique, and you have to test and adjust until you find what works.This will evolve over time. Be patient with yourself and know that health and wellness is an ongoing journey – not a perfect, static formula.For perfectionists, and those who want the right answers now, this is a hard pill to swallow but an important one.
9. Beware of shiny objects
○ You don’t necessarily have to pay a premium to feel better. While those with certain illnesses do need to find proper care that can be very costly, others should beware of the many promises that can lead you astray. Right after my diagnosis, I would have tried or paid anything with the hope of feeling better. This can be dangerous and expensive. The health and wellness industry is a juggernaut that thrives on this type of vulnerability. Do your research and make sure you’re an informed consumer.
○ Integrative health practices can be a godsend; however, some cost a small fortune and make you feel that more is wrong with you than there really is. At one point I was taking over 20 supplements a day by recommendation from my integrative doctor. I finally found a nutritionist (Nathalie Rhone with Nutrition by Nathalie) that taught me to use real food to bring myself back to health. Most of the time, coming back to the simple things will give you the answers you need.
As I write this, I’m happy to report that, I’ve made it to the other side. Some hours, even days go by where I don’t think about MS. However, if I start to feel stressed, tired, or unhealthy, I can feel my symptoms creep back. I use this physical reminder as a way to know if I’m on the right track and when to make adjustments. I am still learning every day.
On good days, I am grateful for my diagnosis because it has changed my view of the world. The disease forced me to make changes that have transformed my life. On bad days, I question my sanity for feeling grateful for a condition that has no cure and so many unknowns. But these days, the good days outweigh the bad, and I am sure that my future is bright.
A positive attitude is the most essential piece of the puzzle and, in the dark times, I’ll always fight to find my way back to it.