1. You don’t need to make any immediate changes to your life.
You will have plenty of time to make the adjustments that you need and want to, but right now is a period of learning for you. It is a time to be gentle with your actions and process the feelings that inevitably flood our bodies. Take in the information available to you. Talk to people. Listen to their stories and experiences, but with the vital knowledge and awareness that you are your own person, with different circumstances and must make the right decisions for yourself. The more people with different outlooks that you are able to speak to, the more you will see that you have options, there’s no one way to live with MS, but there is also no right way that works for everyone. Everyone is different, everyone experiences MS differently, and therefore, we must live with it tailored entirely to ourselves.
2. Look to others for motivation, not for answers.
Like I said before, we immediately have an inclination to want to turn to someone and have them tell us what to do. Being diagnosed is a multilayered, very emotionally charged and turbulent period of our lives. There are many things we deal with, but one of the major feelings I had was guilt. Guilt that I’d done this to myself, guilt that I ignored certain things for so long even when I had a gut feeling that something wasn’t right. I blamed myself so much and therefore didn’t trust my own instinct when it came to making good choices. We want to think that we had something to do with this because we want to also believe that we can fix it. For me, I was told many things including to never wear heels, stop drinking, stop eating dairy, never go into a hot tub or sauna, to limit lifting weights heavier than 5lbs, etc. None of those things could cure my MS and though I am sure that many have found doing some of those things helpful for their symptoms, many recommendations I received were not only unsustainable for me, but they made me feel even more guilt when everything inside of me was fighting a life of restriction and deprivation. I learned along the way that I had to decide how I wanted to live with MS, instead of living against it. I looked for other people living the way that I wanted to and incorporated some of their habits into my routine little by little to see what felt good and what didn’t. I didn’t take their lifestyle as the answer to my disease, but I did draw a ton of inspiration from what others were doing to help me build out my own roadmap forward.
3. There’s no diet that can cure MS.
It may keep others’ symptoms at bay, but the one thing we can be certain of is that there’s no research proving that one diet fits all and prevents or cures anyone’s MS. When I was first diagnosed, one of the things almost everyone I spoke to wanted to share with me is how eliminating certain foods from their diet was the way they’ve been able to keep their MS under control or even “cure” it. The issue with this, but also the most important thing to keep in mind, was that everyone had their own versions of what worked for them and thought it would work for me too! It is one thing to tell someone what worked for you and how you were able to arrive to those conclusions for yourself, I’m all for that, but it’s another to try to market, sell, or persuade someone else to follow that same plan with a false promise that it will cure them. Unfortunately, the Autoimmune Disease marketplace is the most well intentioned, but also predatory space in wellness right now (at least from what I can see on my feed every day.) I know that is a very controversial statement to make, but I also challenge everyone to think about the fact that even with medical advancements and research at the most prolific point they’ve ever been, we still have no definitive idea of how this disease chooses its subjects, when it will arise, how we might trigger it, which environmental and hereditary factors are relevant to its development and how we can reverse the damage it has done let alone cure it forever. There are certainly countless ways to improve certain aspects, ways to treat it, and choices that are statistically better than others, but no one can know for sure. The best judge of your MS is you. No one knows your body better or has spent more time with your MS. You will always have to quarterback your treatment plan and it’s likely that plan will evolve over time. Changing your approach didn’t mean you were wrong, it means it’s time to pivot. Being flexible in your beliefs and open minded will serve you well long term as more options become available to us.
4. Lead your decision making with your quality of life at the forefront.
Take time to adjust and not deprive yourself while you’re going through something so monumental. There’s enough stress and commotion when you’re first getting a diagnosis. You feel like your life is over and everything stands still. You may be feeling the ground beneath you crumbling away. My best advice is to try to not shake things up for yourself more than necessary. When I first was diagnosed, I immediately thought I had to stop working, move out of state to be able to afford a much less expensive lifestyle, I started overdosing myself with vitamins that I read people with MS tend to be deficient in, and I had all put planned my own funeral. If you’ve done this, or you’re currently in the process of doing this, don’t feel bad. It’s a natural reaction- but it’s not necessary. As a rule of thumb, I like to never make life changing decisions when I am in a state of panic. I did not have to quit my job; I did not have to move out of state and I didn’t end up needing to plan my own funeral, though I’ll make sure to leave that binder laying around in 50+ years for whomever may need it. What was most helpful to me was to think about my current lifestyle and the things that I knew I didn’t like about it and also consider what changes I could reasonably start to make to lean into a healthier, more intentional routine. I wanted to make sure that I didn’t lose who I was to my MS. I remember that the first major change I implemented was drinking a gallon of water every day. This wasn’t for my MS, but because MS made me take a long hard look at the quality of my life and where I could do better, I made massive changes, but over a long and gradual period of time that impacted my health far more than any of my immediate and frantic actions did.
5. Sitting the wrong way or lifting something heavy will not give you a new lesion.
This one is pretty self-explanatory and I can’t tell you how many people I have had a laugh with on the phone about this. Most of us think this at some point. For whatever reason, we tend to blame ourselves and think that something we are specifically doing has an impact on where, and when we will get lesions. You have never and will never give yourself a lesion by crossing your legs or bending over too quickly. This is just our mind telling us that it so badly wants to make sense of something that unfortunately, is still too complicated to understand. Know that living in fear of making ourselves worse is living as if we already have. I don’t find it helpful or enjoyable to live that way so everything that I do is with the mentality that I will put myself in the best, strongest position to live well with MS, not to prevent it.
Do your best to understand that most of the flailing we do, swallowing 9 million vitamins a day, giving up alcohol, cheese, gluten, etc. are all ways we try to control our MS. We want to think that everything we do will save us. We feel like we have to do something otherwise we are doing nothing. Implementing healthy habits is an amazing start. MS motivated me to do that for myself, but I do still have MS and I don’t tell myself that doing all of the things I do will prevent me from getting worse. I don’t speak in definitive terms like that about my disease. I definitely recommend trying out new healthy habits, but barring smoking, which we all know is awful for you whether you have MS or not, I’d recommend that you don’t completely cut out anything that brings you joy or happiness during this time. You will be flooded with people who’ve lived with their disease much longer than you who may have found a path for themselves that works for them, but you are not them. Remember that your scans are different, your whole disease is different even if it has the same name, and you have to learn more about your MS and see how you can fit reasonable changes into a lifestyle that is sustainable and enjoyable for you.
If living with MS over the last 11 years has taught me anything, it’s that no one decision I make will be the end all be all of my disease progression. I have created a lifestyle for myself that ensures that I am doing everything I reasonably can, while giving up as little as possible and never forgetting to enjoy myself and most importantly, be myself!
Comments