By Dr. Marnie Frisch, ND

March is National Multiple Sclerosis Month. I am drawn to write something for the first time about my experience13 years post diagnosis. I believe I have moved through all the stages of grief, and now settled into acceptance and embracing and practicing the life lessons I have learned from my experience. These lessons apply to me as a person living with MS, and have given me added wisdom as a doctor. Just like grief can bare it’s head even when you think you are through it, so can needing reminders of the lessons to keep me having a full life. Living with chronic disease is HARD, especially if that disease is “silent” or “invisible” to others. I am grateful and humbled that I was able to catch and work with my diagnosis in a way that has kept me out of needing more assistance and adaptability than many with this disease.

MS, or Multiple Sclerosis is an autoimmune disease that affects the central nervous system, which consists of the brain, the spinal cord, and the optic nerves. The immune system damages the Myelin, the fatty substance that surrounds and insulates the nerve fibers, and the cells that make it. It is like having wiring in your home without insulation- signals do not travel well, efficiently, or at all. Damaged areas develop scar tissue on the brain and the spinal cord, hence the name sclerosis.

For some background, I was diagnosed with MS when I was 40 years old. I had a 6 year old daughter, and an 18 month old son, and a growing Naturopathic Medical practice. I woke one day with a pain behind my left eye and a portion of the vision missing. It was as if looking at the horizon, and could only see the sky, and nothing below. It was strange. My medically educated self was trying to figure out what would cause this strange distribution. Was I having a stroke? Did I injure my eye? Nothing fully made sense, but I did not really investigate on my own any further ( Dr. Google was not as ubiquitous then). I am not much of a worrier about my own health, and went on with my day to see if it would resolve. It did not. I was flying out of town in a few days, and thought I better get this checked out- worrying that the altitude could make something worse. I get in with the eye doctor, who diagnosed me with optic neuritis, and sent me for a brain MRI and a neurology consult, as this can often be the first sign of MS. It was discovered that I had several lesions (sclerotic plaques) on both sides of my brain. In that 20 minute conversation, I was told (or this is what I heard) that I “probably had MS,”but that I was “kind of old to have this diagnosis”. But, “Here, you should start these Interferon shots.” I told him I would think about this (it was a bit overwhelming), went home, and called a Naturopathic Colleague in Seattle who specializes in MS and Parkinson’s Disease and made an appointment. I needed someone who had an underlying approach to health and disease like I did, and the experience to help me navigate this. Most of all, I needed to not be my own doctor.

The appointments I had with this ND were very helpful. I eliminated gluten and dairy (I was mostly dairy-free already from having asthma- which is a whole other story that got me into Naturopathic Medicine in the first place) from my diet, he stressed the importance of stress reduction, and started me on some basic and helpful supplements. My optic neuritis went away within about 6 weeks, and I went on my way with my life. I tended to my home life and my business, and, after a couple years, kind of forgot the MS was a thing for me-

…until, about 8 years later, I was walking my daughter to the bus stop and my left leg would not follow me down the stairs. For a brief minute, I thought I was having a stroke (why I would be having a stroke, I have no idea, I was healthy and had no risk factors), and then I remembered the MS! Seriously, I had forgotten about it. However, this is where the new phase of this journey began and has not really stopped since. Symptoms started coming on strong over the next few months, with intense, deep nerve pain on my left arm, inability to pull my left leg forward, fingers would freeze up at work while typing, my cognition was challenged, I could not form sentences out of the words in my head, and the fatigue would hit hard. Some days I literally could not move my body to get out of bed. And, I became so sensitive to stimuli and over stimulation-too much input was overwhelming my nervous system. A repeat MRI found lesions on both sides of my brain, my cerebellum, and a large one on my cervical spine. It also found my brain had lost some volume. I was seeing a new, more holistically minded neurologist in Seattle, and she too recommended medication due to results. It was scary to see and hear this, for obvious reasons but also because my livelihood relied heavily on my ability to think and process information- let alone just getting through life! How would this be for my children? I spent the next many years pursuing ALL the things- changing my diet, taking supplements, consulting Naturopathic doctors, Homeopathic practitioners, chiropractors, physical therapists, acupuncturists, spiritual healers. I worked as best I could to prioritize sleep, decrease stress, and basically adapt my lifestyle to my disease. Symptoms went up and down, some days were better, but my left side never fully regained strength, the fatigue persisted, the pains came and went, the easy overstimulation sucked. I would get a cold or a virus and it would debilitate me (immune system was stimulated). Basically, my nervous system felt inflamed and there was never a day that went by that I did not think about having this disease, because something always was there to remind me.

Ultimately, after pursuing and pushing and trying most things… I came to a place where I was scared to get any worse. I really searched deep within myself, talked extensively with friends, and consulted trusted colleagues and medical experts in the field, and I decided to finally start a pharmaceutical medication. At this juncture- I want to say, there are many medications for MS, and none of them come without some risk, including increased risks of even worse disease. This was also the beginning of COVID-19, and we knew so little then. As a primary care doctor who did not have the option to ”stay home”, I also would not take the added risk of suppressing my immune system, so I chose a medication that had a different mechanism of action. This was really hard for me as an ND. I still question my decision at times, being a doctor who practices natural medicine and believes in the body’s ability to heal itself. So, here I am almost 3 years later on an infusion that protects my brain and spinal cord from being attacked by my immune system, and I honestly can say I feel better than I have in a very long time. I feel like I have my life back, and maybe even it’s better than ever.

What have I learned along the way? So much on a mental and emotional level had to be healed in order for the physical healing to take place. Here is what I worked through and found, both as a doctor and as a patient, and hope to pass on to anyone that can use it- and, by no means, is this a complete list.

Lessons Learned from Having Multiple Sclerosis

1. Don’t discount the Allopathic Medical system and what pharmaceutical medications can provide. This may be a no-brainer for some, but being in a natural and vital medicine world, it can take a lot to wrap your head around. I start here, because I am a licensed doctor, and I have patients that need to hear this at times. Could I have chosen to not medicate and control my symptoms? Maybe, but, I would have had to abandon things I loved about my life. I love my kids and everything they do, I like how I parent, I love my work, I love to play, I love live music, I love being an active part of my community, I love to travel. I want these things in my life, and there is a trade off with debilitating illness.
2. Vitality matters. Just because you are choosing medication, does not mean you stop supporting your body in all the other ways. Eat as healthy as you can and have a treat once in a while without guilt, move your body, connect to people, get good sleep, and support your other body systems. Work with an ND to help you!
3. Build your team and find your touchstone. Find providers that hear you and see you, and that you trust. Allow yourself to be a patient. Yes, empower yourself and learn about your diagnosis- ask questions and come prepared to your appointments. But, in the day of the internet, it can get exhausting and expensive to find that “magic cure” on You Tube, Google, Facebook, Tik Tok, etc. Find your healers that you trust, and try and stick with them until it really does not work for you. I get that not every provider has the time and resources that you may want or need. Many of us have large tool boxes, and good resources, but we need to follow you through how things are working or not. Consistency does help. Try and find one trusted partner in the healthcare field. Sometimes this is your specialist, your primary care doctor, your mental health therapist, or your spiritual healer. We are in a world of many options now, but try and have one consistent person as a touchstone for you so you can spend your energy on the healing work.
4. Health crises give you an opportunity to do your inner work. For me, I saw my life leading in a direction that didn’t serve me, and it was not how I wanted to spend the remainder of it. Find support through therapy, workshops, good friends, whatever holds a safe space for you to address your shadows and work through them. This type of healing takes time and is a continual process. But, remember, the mental, spiritual and physical are all connected.
5. What can you control, and what can’t you? We live in a stressful world. We are busy. We are needed, and we have needs. A stress free life does not exist for most of us. And, while I do believe the body has the ability to heal itself, it needs to be in a clean and supportive environment, and stressors need to be minimized. How can you set up your days of work and parenting to be as stress free as possible? Sometimes it has to be reframing how you look at things. One of the most useful, and really simple things one of my mentors told me (thank you Dr. Amy Rothenberg), is that we have FULL lives. Busy feels strained. I shifted my thinking and could handle things better, physically and mentally when I remind myself and can be grateful for how full my life is.
6. Learn to say NO. Have boundaries. Pay attention to what becomes too much, and triggers flares. Self care is not self-ish.
7. And, Say YES too! Seek joy. Life is short, movement, thinking, speaking, hearing, feeling, connecting are gifts to be grateful for. Use them while you can! I do this funny thing with myself sometimes when trying to figure out what is worth the energy and resources- I ask myself if this will be something that will enhance, be unique, or new to me or my loved ones? Granted, I have always been a yes person ( and need #6)…so, now I pick and choose.
8. Learn to speak up for yourself, because no one else really knows how you feel when you feel it. Why I am still learning this at 54 years old is crazy, but it’s true. I think a lot of us with chronic health issues have learned to mask our symptoms, and just keep on keeping on. People think you are fine, because you are showing up and are navigating life. They, including our loved ones, do not see how much work it can sometimes take to just get out of bed or get words formed into sentences, let alone serve others. It is honestly the thing I hate the most about having MS. But it takes strength sometimes to do this, and when you are fatigued, it is even harder.
9. Surround yourself with people that see you and support you, and limit (or cut out) those that drain you or tear you down. I know this is complicated, and takes a certain privilege, financial stability, inner strength, and support system to get out of unhealthy relationships. Find ways to protect your sacred self, and start with small steps until you find a way through.
10. Be gentle with yourself. Managing chronic illness can feel like a full time job at times. Take breaks from all the appointments, all the research, all the problem solving. Let go of the “shoulds”. Take a nap.
11. Be prepared. I now carry ear plugs with me, and sometimes my foldable cane. I make sure I have extra days set up for travel when I arrive and when I return. It takes longer for my body to adapt than it ever has before (yes, this could be aging too!).
12. Access to healthcare is a privilege. As someone who uses the heck out of their insurance, I see my privilege. I am grateful for private health insurance and the choices in medicine it allows me. As a primary care doctor, I see and feel the struggle each day about how difficult and expensive access to healthcare in this country is. It affects how patients ( and doctors) have to navigate through the medical system and life as a whole. We need better for everyone.

There is so much more I could add to this list, and my story is not done. For me, the gift of disease is that I get to learn and practice these lessons first hand, and I think they make me a better person, parent, and doctor. You may have a list of your own, either because of your MS, or other chronic disease. I would love to know them.