What I Wish I Knew After an MS Diagnosis

I was recently connected to a patient at Cleveland Clinic who was given my blog to read in consideration of undergoing HSCT at the recommendation of their care team. We video chatted for almost two hours. This individual told me I was the first person they had talked to who also had MS. While we discussed my personal experience with HSCT, our conversation veered more towards MS in general. A phrase I kept saying over and over was, “I wish I had known X when I was diagnosed.”

To celebrate my knowledge gained over the last 12 years, here is my list of what I wish someone told me at the beginning.

12 Things I Learned About Life with MS

You did absolutely nothing wrong; you did not cause your MS. As a doctor described it to me, there are three pillars of health: genetics, environmental, and lifestyle. You have no control over your genetics, minimum control over your environment, and total control over your lifestyle. Sometimes you get a crap hand dealt. Don’t waste time with coulda, woulda, shoulda. MS is the uninvited guest to your home, but it isn’t your home. It’s a part of you but doesn’t have to be your entire personality. It will influence decisions, but it doesn’t have to be the deciding vote. It’s a club nobody wants to join but your membership once secured, is for life.
Start physical therapy immediately and specifically target a few things every day. I remember asking what to expect and the doctor, in a nonchalant way, said “everyone is different.” While true, it was supremely unhelpful. You have to learn the medical vernacular the hard way. At diagnosis I was ‘fine’ with no symptoms. Where would I be now if the doctor had said, “everyone presents differently but here are a few things to be aware of and things you can do.” Know what foot drop is. Strengthen your hip flexors. Work on balance. Learn and understand common MS symptoms like bowel and bladder dysfunction, balance and proprioception issues, cognition and brain fog, fatigue, balance, and gait and walking difficulties. If you know what to look out for it informs what you say to your medical team and how they can support you.
Gather and understand your medical team. Most people are thrust from healthy to chronically ill with no warning. Understand how a medical team interacts, who you can ask for specific kinds of help and more. Yes, there is your neurologist, but I bet they also work with a nurse, a physician assistant, as well as fellows and residents if you’re at a teaching hospital too. Then there are MS-specific physical and occupational therapists as well as behavioral health psychologists who can help you navigate a new diagnosis and a scary disease. It’s ok to ask how to communicate with them, what you can expect in terms of steady vs relapse states, and for them to back up any of their recommendations with scientific papers. Ask questions, take notes, take up your time with the care team. Bring a friend, partner, or family member to appointments. Have someone on the phone listening. Parrot back what they said to ensure you understood them. Also, if they dismiss you, make you feel crazy or treat you poorly – fire them. This shit is way too hard to hate your doctor. There are good ones out there… more than a few.
Functional medicine does not replace a DMT – it’s AND not OR. Wanting to try the Wahl’s Protocol diet or an elimination diet or supplements is great for affecting the lifestyle side of your health. The healthier you are going into any treatment, the better. But those diet changes can’t replace the cellular impact of a disease modifying therapy (DMT). The majority of DMTs we have impact the number of relapses and help mitigate future disability. Start one now. Do the other stuff too but trust your doctor. The wellness industry is a behemoth and prays on the hope of the chronically ill. It’s a multi-billion-dollar industry that is making money selling you hope. I would do ANYTHING to walk again but I am not taking my advice from an Instagram influencer or a snake oil salesman. When someone is pitching you a cure, ask yourself who benefits from this? Ask yourself and your doctor if there is harm in trying it. Understand confirmation bias and the placebo effect and spend your money wisely.
Start Vitamin D + K supplements yesterday. Did you know the closer you are to the equator, the less MS diagnoses exist? Vitamin D has a direct impact on your immune system and health. I take 5,000 IUs daily in a combined D+K supplement. My neurologist will usually ask for labs once a year to check my numbers. But, when getting lab orders placed, I always ask whatever doctor I am seeing if they can add a Vitamin D check to ensure I am still in normal range and not trending low.
You can’t make up for lost sleep or sleep when you’re dead. Go to bed. The absurd and oft touted mantra of sleeping when you’re dead is both wrong and has the potential to cause unmitigated harm. Sleep hygiene is a thing. Learn about it and see what affects your sleep and pay attention. Go to bed and wake up around the same time every night. Blackout curtains are worth every penny. Sleep cold. Wind down in the evening away from screens. You don’t get sleep back. You can’t make it up. Guard your sleep fiercely as it helps everything in your life.
Understand your insurance, coverage, copays, deductibles and more. This is a language all its own and is designed to wear you down. Insurance is banking on you NOT fighting back. The system wants you to stay ignorant and assume they have your best interest at heart. They don’t. They are not all created equal and no one is coming to help you understand your coverage. Read and understand it. I had quite the year-long journey with a 10k reimbursement for acute rehab and chronicled my exhausting and infuriating fight.
A salary is a number; health benefits are life altering. Interviewing for a new job and receive an offer with a salary? The number means nothing if you have crap medical coverage. When first diagnosed, I worked for the federal government and had incredible health coverage. Then working at Hilton, I had the same provider — Blue Cross Blue Shield — and had a fraction of the coverage. Now working at Cleveland Clinic, I can’t imagine any other health plan ever. My health benefits, according to HR, account for an additional 25k to my base salary but for me, that is low balling to the Nth degree. 700k bone marrow transplant? I paid around $350 in copays. Your coverage impacts your bottom line. Learn it, know it and know you can fight back. They want you to give up. Document in writing, make notes of dates and times. Call and ask questions and fight them back for the coverage you deserve. Unfortunately, denials are often part of their game. They are not absolute.
Understand the additional coverage and benefits that will impact your healthcare. When you’re healthy you think a pharmacist is a pill counter. When you have a diagnosis like MS, the pharmacist and pharmacy coverage matters. Ocrevus when I was on it – a common DMT – is a twice-yearly infusion that costs around 100k for each infusion. I paid $0. Who ships specialty medicines and what do you owe? What copay assistance programs exist from the pharmaceutical company or the MS Society? Also put money into a Health Savings Account if your company offers. This is PRE TAX money to help pay health-related expenses and can be used to reimburse you for what you know you will need — copays, medications, mobility devices, and more. The ADA, FMLA, and reasonable accommodation as well as short term and long-term disability are there for a reason. Understand the differences, your financial security, and use the benefits if you’re able. Don’t be ashamed.
There’s no such thing as normal in health, there is only differing degrees of assumed health. I spent A LOT of time and precious energy hiding my fatigue and disability from my job, my coworkers, and the world. I desperately wanted to BE NORMAL, so I worked harder and longer proving to everyone I was ok when I really wasn’t. Stress is supposed to be intermittent with periods of recovery. You are not supposed to be stressed all the time, with no break or relief. Your body is VERY LOUD and VERY CLEAR when it’s in distress. Pay attention to the cues its giving and act accordingly.
Alcohol isn’t a treat; it’s lighter fluid on a burning fire. I stopped drinking a year ago. I love champagne, went on several wine-tasting trips in California and even other countries. Occasionally I still miss it. I have no issue with quantity and have no bad associations with booze. But I kept drinking, even occasionally, because I thought I deserved it. Guess what, there is no benefit to alcohol. I realized that I loved the ritual more than the beverage. I love a fancy cocktail at a restaurant. I enjoyed meeting friends for a drink after work. It’s embedded in our culture at every turn. But mocktails, non-alcoholic beverages, and even bubbly water can have all of the ritual with none of the side effects or adverse medication interactions. When drinking affected my ability to walk, it was pretty easy to stop drinking. I wish it hadn’t taken that clear of a cost/benefit analysis for me to stop.
Connect with others who have MS. I did not want to associate when first diagnosed with the MS community. It was me vs. them. I eschewed knowledge sharing and support as a way to protect myself from disability. That was really really dumb. Maybe I would have learned some of these 12 things long before I did if I had connected and immersed in the community. There are people and resources online, all over the world. It’s a wonderful, diverse and welcoming community that shares info and resources and most of all, support. You should never feel isolated or alone.

Your life may look different, but different isn’t bad.

It’s ok to grieve what you’ve lost but don’t sign off on your future because you are living in the past and angry at your present. I resent the loss of choice, but I love my life. It occurred to me recently while watching an episode of the Big Bang Theory that those characters make no excuse for wanting take out, eating on the couch, having friends over to Sheldon’s apartment and doing a lot of the same things every day. Yes, I have MS, but I still love hosting parties at my house, working remotely, and holding to fierce boundaries to protect my mental and emotional health. The village I’ve amassed in my life allows me the privilege of advocacy and infinite choices in life because I have a safety net. But remember the right people show up and those that can’t or don’t, fade away and out of your life. You are not a burden. Let people help you. You are worthy of love. Disability is not a bad word. Life may be harder, trickier, different… but it can also be beautiful, wonderful and amazing.