As I type, I am having my Ocrevus infusion to slow the progression of my multiple sclerosis (or MS).
It’s hard to believe a decade has passed since I first began my multiple sclerosis journey. (Below is my first medical picture during a steroid infusion to combat my sudden optic neuritis, or inflammation of the optic nerve, which can — and did for me — cause temporary blindness.)
From 2012 to now, my MS journey has taught me more than I can convey about myself, others, diseases, medical staff, medical therapies, insurance, and more; and I suppose this is why writing this piece is important to me. First though, if you are new to my medical journey, welcome. There is nothing to be scared of here; and if you are nervous, take a seat and a deep breath before reading on because you can do this. Regardless if this is your first reading or you’ve been by my internet-side from the start, thank you for taking the time to read my words. Time is valuable and this never goes without understanding and appreciation.
Back to why I am writing: 2022 marks my 10-year multiple sclerosis anniversary, and I feel compelled to discuss what I have learned thus far …
↠ 10 LESSONS FROM MY 10-YEAR MULTIPLE SCLEROSIS JOURNEY ↞
ABOUT THE DISEASE — SIMPLE AND CLEAR
I started not knowing what multiple sclerosis was so much so that I couldn’t even pronounce the word ‘sclerosis.’ You may not know about MS either — and that’s totally fine because what is important is that you are here and you want to learn …
Multiple sclerosis is an autoimmune disease. It occurs when the immune system attacks its own tissues. Specifically, this means the immune system destroys the myelin sheath or protective covering on a person’s nerves.
When this nerve damage happens, signals — transmitted from the brain to the body — are interrupted or prevented. Depending on what nerve is damaged and what message was unable to be sent, a range of attacks (or symptoms) can occur.
A LITERAL ‘RANGE’ OF ATTACKS
Multiple sclerosis is a disease that is chronic (meaning it persists for a long time), progressive (meaning it worsens as the disease spreads), degenerative (meaning it causes decline and deterioration), and debilitating (meaning it can cause serious weakness). This is because once damage is done to nerves, it is irreparable.
Because the disease affects the nervous system — and the nervous system controls every part of the body — an attack is unpredictable, meaning it can happen on any nerve and at any time.
This is hard for others to understand — and for me to understand at first. Surely if a doctor could label me with a disease, the doctor could tell me information on exact symptoms. Far from it. Imagine anything negative happening to your body: Slurred speech, muscle weakness, pain, fatigue, unscratchable itch, electric-shock sensations, tingling, impaired coordination, dizziness, bladder or/and bowel dysfunction, memory loss, sexual problems, paralysis — the list goes on because again MS attacks depend on what nerve was effected and what message was trying to be sent.
Don’t let this scare you though and here’s why …
“MY MS IS NOT YOUR MS”
One of the most helpful lessons I learned comes from the saying “My MS is not your MS.”
To understand this, let’s start at the beginning …
Factor A: Every person is unique based on genetics, gender, age, diet, environment, and more.
Factor B: There are three different types of MS. (I have relapsing-remitting, along with 85% of those diagnosed. This is where attacks continue and worsen [relapsing] but are followed by periods of partial or complete recovery [remitting].)
Factor C: Combining these two factors together means everyone’s multiple sclerosis is unique. When I was diagnosed and I understood the vast span of MS attacks, I became terrified. I saw people sitting in wheelchairs but unable to push the chairs themselves, I heard people whisper slurred incomprehensible words, I saw people having to be fed by others, and I learned about the extreme pain that spreads through others’ bodies.
Yet, everyone’s experience with this disease is unique — and this is why there is no room for anxiety.
There is no guarantee that I will experience what others have, do, or will — In fact, I have not had any of the symptoms in Factor C, which goes to show how unique MS is per person. When I realized my body is different and therefore my disease is different, that thought calmed me tremendously.
Saying that, those with MS can have similar attacks. This is based on similar damage done to the same nerve. Still, the severity and duration of attacks depend on each person.
Therefore, to say every person with MS had, has, or will have identical nerve damage — meaning the same nerve was damaged … at the same nerve-location … and the same damage-severity occurred — that is what is nearly impossible to replicate.
THE ‘INVISIBLE’ DISEASE NICKNAME
Those not diagnosed struggle to understand multiple sclerosis for this reason: They have little knowledge of diseases and assume a person with a disease should look ill. MS, though, is known as an ‘invisible disease,’ meaning the damage is not visible because it is done on nerves. Therefore, attacks are hidden. For instance, my first attack — the one you saw at the start of this post that diagnosed my MS — caused me to go blind in my left eye. Blindness is not noticeable to others so I appeared as I did before — which was healthy.
I want to mention the ‘invisible disease’ nickname though because a common topic that comes up is how others tell someone diagnosed with MS, “You don’t look like you have a disease” or “But you look healthy.” Comments like this can bring forth frustration and anger among those with MS because they feel undermined and defensive of being sick.
One lesson I learned comes in two parts:
First, I learned how to talk to someone diagnosed, and the key is to simply have awareness of ‘invisible diseases.’ When someone opens up about having multiple sclerosis (or any illness), a nice way to respond can be to explain how you feel: “I would not have known because you seem strong and healthy.” Realize there was an element of vulnerability in sharing this health news.
On the other hand, for those diagnosed with an ‘invisible’ disease, have compassion too. Remember you struggled (and may still struggle) to understand your disease so it makes sense another person would find the topic hard to understand, too. I take these comments as a compliment. “Thank you,” I still say, “because this means the strength I’ve tried to gain and the strength I did not know I had is showing. Thank you for thinking I was healthy and normal because sometimes I do not feel that way.” In truth, on bad days, I feel better knowing others have no idea — I am in charge of what I want people to know and there is an element of control in that … which is nice to remember because there is no control over the disease.
RARITY MEANS LITTLE TALK
Multiple sclerosis is rare.
Less than half … of one percent of people are diagnosed in America. In the world, less than one-tenth … of one percent of people are diagnosed.
I remember hearing someone I worked with was diagnosed with multiple sclerosis, and I cannot quite describe how I felt when I heard the news. I immediately found her … then stumbled over what to say because I didn’t know what to say. I simply wanted to see her — to be near another a person I knew who had MS, too. Her diagnosis came after I had been living with the disease for six years — Six years of never knowing another person in my life to have MS.
Ten years later, I still have yet to meet another person I know (or even another person outside of my infusion center) who has been diagnosed with MS.
IS THERE A CURE?
There is no cure for multiple sclerosis, though you may hear of recoveries after attacks.
Two thoughts on this:
Attacks and the disease itself are different. On average, an attack can last two weeks to the rest of that person’s life. When an attack happens, the nerve damage will never heal. Still, the body finds other ways to combat and cope (because the human body is remarkable). For instance, my eyesight came back due to my body’s ability to transmit signals for sight in a different way. When this coping-and-adapting occurs, that is considered the recovery — but ‘recovery’ does not mean ‘cure’. Basically, there will be other attacks on the same or other nerves.
Saying all of this, research is underway right now to develop a cure for multiple sclerosis. The most interesting one deals with (enter Article One) an accidental discovery-cure in Sheffield, England (ironically my husband Andy emigrated from there so it makes sense he is the one that learned of this news). In this discovery/maybe-cure, patients with leukemia — who also had MS — were treated with multiple chemotherapies, which killed every immune cell, such as “the subset of T cells which mistakenly attack their own nervous system.” From there, a blood stem cell transplant was given — using cells pre-chemotherapy. (enter Article Two) That’s when both patients and doctors discovered the treatment may have cured MS:
“The body uses these [pre-chemotherapy blood stem] cells to build a completely new immune system without any autoreactive cells.”
Absolutely amazing. There’s tons more about this news but know intended — and unintended — research is underway for a cure!
SEVERAL DISEASE-MODIFYING THERAPIES
The truth though is a cure could come soon or later, which is why there are disease-modifying therapies that slow the disease’s progression.
If there is one lesson I learned the hard way it was that I did not believe I had multiple sclerosis so I tried to ignore my diagnosis. I felt convinced there someone could not be labeled with a serious disease suddenly … and that meant there was no way I would allow myself to be labeled with a serious disease suddenly either.
Ignoring my diagnoses was the most detrimental decision though — and I cannot speak enough about how faulty this was.
Because of my lack of knowledge and fear, I did not go on a disease-modifying treatment until four years after my diagnosis … which meant my multiple sclerosis progressed much faster than if I had received treatment. Obviously do what is right for you, but if there is one bit of advice to take away, it is this: Consider disease-modifying therapies seriously.
These therapies (or treatments to control a specific health problem) suppress the immune system. These help decrease disease progression. There are a range of treatments, and you can imagine them in a sort-of tier based on disease severity. For example, I started with the least invasive: a self-injection (Copaxone) …
then a once-a-day pill (Aubagio).
As the disease progresses though, the treatments become more serious. For instance, I have infusions at a hospital (Ocrevus). Infusions are the hardest hitting because they are a form of chemotherapy. When I heard this, it was startling because when people hear the word ‘chemotherapy,’ we tend to think ‘super serious treatment for cancer.’ True, it is super serious; however, chemotherapy is simply a chemical-substance used as a treatment for a disease — for any disease.
HELP RAISE AWARENESS
I mentioned above, I tried to ignore my diagnosis. Because of this, I hid it from others. I told only my immediate family then a small amount of co-workers on a need-to-know basis. My secret became easier to keep when I switched careers after one year into having MS. This meant even if I wrote about my health journey, few to no one I newly worked with saw my posts. This also meant I was able to keep my secret for about five years.
In hindsight, I learned the importance of speaking out about multiple sclerosis in the hopes of bringing awareness to the disease. When I was first diagnosed, I spent terrified hours and days sifting through internet sites searching for personal writings from someone diagnosed. I found none … and this is when I decided to share my story. In truth, I never thought my words would find others diagnosed or others who knew someone diagnosed … but they did. I’ve formed friendships with strangers who have reached out and we’ve swapped stories and support. To these friends I I will never be able to properly convey how much emotion your words carry — You speak of my positivity but know you are the reason I have this mentality. In turn, I want to give hope back — You aren’t alone, and I’m one person of many who are here. If you need someone, don’t hesitate in sending me a message because I will more than happily respond. Connections can lift us both up.
POSITIVITY IS KEY
I say all of this because a huge lesson I learned is this:
There is power in positivity.
It’s beyond easy to fall into a dark abyss of fear (and I should know because I’m a natural-born pessimist), but living in fear of this disease will honestly and truly do more harm than good — For one, stress triggers multiple sclerosis attacks. Instead, focusing on and seeing positives — carrying a positive mindset — will go much further.
I’ve written about this many times, but here’s an example: Instead of focusing on the fact that I have a serious autoimmune disease, I make a conscious decision to see the good: I am able to get infusions to slow the disease’s progression. Knowing this, every time I have my infusion I celebrate: I sometimes bring in donuts for the nurses to thank them and get others to celebrate too…
or I treat myself to food that makes me smile (such as a happy, childish vanilla ice cream cone covered in rainbow sprinkles) …
or I relax by slipping into my pajamas in the afternoon and snuggling with our babies for the rest of the day.
True, none of this changes what I have and go through, but my infusions have now turned into something I look forward to. Take the day off. Reward yourself. Find your positives.
USE YOUR MS TO FUEL YOUR DREAMS
Multiple sclerosis is not a death sentence.
I admit, when I first started this health journey, I felt it was. However, I’ve grown mentally and physically in ways I cannot imagine I would have grown without this disease. This is why I am ironically sort of grateful for it. Here are examples: I went from having near-panic attacks at the sight of a needle to giving myself injections and mastering hours-long infusions. I went from being close to fainting at the mere word ‘blood’ to sitting through multiple vials of blood being taken. I went from having so many un-lived dreams that life itself was not prized and precious to filling days focused on achieving dreams now.
I guess I say all of this to explain that while there is no way to know what tomorrow will bring — I suppose with life in general but definitely with multiple sclerosis — focus now on your dreams. Follow them. Set forth realistic steps and keep moving forward. Your dreams can only happen if you chase them.
Don’t let your multiple sclerosis stop you.
For more information on the disease-modifying treatments discussed, visit the company’s website:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.
You’re amazing. Thanks for pressing forward in life and sharing your journey with us. As I read through this, I was reminded of monuments I built in my progress from death to life. You may remember I had a work accident that killed me, and after resuscitation and a coma, I had TBI, PTSD, and a few other things. We LOOK normal but aren’t the Same. Please share some big hugs with Andy on my behalf. One of my many mottos is “No bad days, only good and better ones.” Love you both very much. Pet the fur babies for me.
It is so great to hear from you! You always make Andy and I smile super big!
I do remember your journey (and remain very appreciative that you shared it with us) — It has stayed with me because I can only image the struggles you must have faced (and still face); and I also think often about your strong positive mindset too, which is beautiful. You are right in how many people look normal, but there is much going on underneath — whether it is a disease, a horrible accident, or more — and your words remind me to be more understanding of others too so I appreciate that much.
I will definitely give Andy a large hug and snuggles to our babies — They, I’m positive, would like to send headbutts back to you.
Thank you so much for your kind words and taking the time to read and write. I hope you had a wonderful Christmas and may this new year bring many more positives your way.