- Member Spotlight
Each month it is our goal to introduce you to a member of the Multiple Sclerosis Encouragement Organization (MSEO). This person could be a Group Facilitator, member or care partner.
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But you don't look sick
But You Don't Look Sick!
Put yourself in a busy parking lot. You’ve been circling for 15 minutes trying to find parking.
All that’s left are the disability spots near the front door. You see a car pull in from the street and slide
into a disability spot. Hangtag on the mirror, the disability symbol on the license plate: what do you
expect to see when the person gets out of the car? I used to expect to see someone with some sort of
visible or physical impairment. Perhaps you expect to see a senior citizen that walks slowly. The last
thing you expect to see is a young woman in her late twenties. She doesn’t seem to be walking with
difficulty. What are you thinking? Are you thinking: “What the heck?! There’s nothing wrong with her!
She’s probably using her grandma’s placard.”? We all think it; myself included. What we fail to realize
is that there are invisible diseases and illnesses. There are people who are chronically ill that you can’t
see by their appearance.
One of these chronic illnesses is Multiple Sclerosis (MS). A lot of people have heard of MS or
know someone who has been affected by it. When I tell people I have MS one of the first things that
happens is the head cocked to the side and the “I’m so sorry” smile that people do, the second thing is
“I know so and so suffered from that.” Even with the acknowledgment that such a disease exists a lot of
times people think of it in extremes. In television and movies when you see someone with MS it is
often depicted as worst case scenario.
I have Multiple Sclerosis. That sentence is one of the hardest ones I have ever had to say out
loud. I had lost some significant vision in my left eye. I was staunchly against going to see a doctor. I
was in enough pain that I decided to go see the optometrist. “There is nothing wrong with your eye that
I can tell,” she said after sitting through two hours of tests, “you can use some of these steroid eye
drops and maybe that will help.” She sent me on my way. It was a Friday afternoon and there wasn't
much more that could be done. I scrounged together what I could to get the eye drops. They would help
for a couple of minutes but then it would hurt and be even more blurry.
On Saturday afternoon I got a call from the optometrist office. “I've been thinking about you all
through the night last night,” she said.
“Oh great,” I thought to myself, “just what everyone wants to hear from a doctor! Maybe there's
something seriously wrong, oh no. What could it be?” My mind started racing a little.
“You told me the drops weren't really doing much to help right? Well I really think you should go see a
neurologist. There's one I can give you a referral to, one I work with frequently.” I took down the
information, it was now Saturday and they weren't open. I would have to wait till Monday morning.
The weekend was filled with fears and tears. Some of the tears were from the unknown and some of the
tears were from the pain that was continuing to mount behind my eyes. Thankfully the neurologist was
able to get me in to see him on Tuesday. After another round of “can you see this” type of tests the
doctor looked concerned. “I think we need to do a spinal tap. I feel confident that you might have
Multiple Sclerosis.” The spinal tap, or lumbar puncture, is used to help diagnose multiple sclerosis.
They also use MRI's for confirmation and to see how progressed the disease is. (For more information
please visit www.nationalmssociety.org/What-is-MS) I remember feeling confused. “If something is
wrong with my eye, why do they need to stick a needle in my spine?” I should probably mention at this
point I was deathly afraid of needles. I saw my pediatrician until I was 21 because they used baby
needles. I could barely have blood drawn without crying or having a panic attack. So the thought of a
needle going into my spine paralyzed me. At least the doctor was feeling good about it, I remember him
joking (before he plunges a huge needle into me) “Oh wow, it's been years since I've done one of
these!” I know he was joking and trying to ease the tension but it's all about timing and reading the
room. This was not the room for that joke. That needle was the first of many life changing needle pokes
I would have to endure. I have been forced to overcome my fear of needles and can now confidently
point out where on my arm has the best spot for a blood draw.
“Multiple Sclerosis.” When I first heard the words come out of the doctor’s mouth my first
thought was that it was a death sentence. My mind went blank and crazy all at the same time. Have you
ever had your computer freeze while you had a bunch of tabs open on the browser? The screen starts
blinking, you can hear music playing but you can’t make the system work. That’s how my brain was,
and still is sometimes. “But don't worry,” he continued, “IF it is Multiple Sclerosis it's just the
beginning because you don't have any other symptoms.” I got home that day still in a daze and made
my first dumb decision. I went to Google. If you’ve ever had a head cold or small ailment and gone to
Google you know about the rabbit hole. One click leads to another and another, and then all the sudden
you somehow are going to die in the next month. One good thing that came from Google was the
National MS Society.
Through the National MS Society website I was able to find information about a support group.
It was an all women support group that met once a month not too far from where I was living. They
happened to have a meeting a couple days away. I sent an email to request to be signed up into the
group. The email I got back from the coordinator stated the time, place and name of the leader for the
meeting. So I made my way to them the next week, not sure what to expect. In the movies and
television shows MS is usually depicted at life end stages. People unable to feed themselves, wasting
away, unable to walk, tremors and a variety of other scary things - I was sure that was what I was going
to see in the support group. The group was all women and I was surprised when I got to the group to
see a bunch of women who didn’t look sick at all. Sure there were a couple of women that used a cane
but really they all looked, for lack of a better word, normal. One of the first topics brought up in the
group was people being shamed and always hearing the words “but you don’t look sick.”
“But you don’t look sick” is one of the most frustrating sentences someone with chronic illness
can hear. It’s not typically meant as a compliment, it’s usually meant as an accusation. The shame a
person feels when they are told that they don’t look sick is unimaginable.
I was having a good day recently. I felt good about how I was walking, I had to go to the store
to get just a few small things. When I go to the store, I don't often use my walker because I use the
electric carts or I use a regular cart as my walker. I used my disability parking permit. I used a shopping
cart as my walker that day. After being in the store for twenty minutes I was headed back to my car.
There was a note on my windshield. At first I thought “Oh hell, I guess someone hit my car.” In my
worst dreams I could not have imagined what was written. “You are not disabled,” it read, “you should
be ashamed using a handicap spot when you are clearly not disabled. Make better choices. Jesus is
watching you.” My mind crumbled into mush. My first reaction was to cry, it wasn’t sad tears, it was
tears of anger. How dare someone judge me when they don’t know my story?
My first symptom with MS was losing my vision. Have you ever tried to watch a 3D movie
without the right glasses? Everything seems a little wonky and makes you dizzy? Yep, that’s what it
was like. Colors were distorted, I couldn’t see straight and it got to the point where I couldn’t discern
features of people. I was able to see if someone was standing in front of me but I couldn’t tell you their
race, hair color, facial features or anything. It was one of the most terrifying experiences of my life. I
was instructed to go to the Emergency Room at the local hospital; I wasn’t able to drive so my mother
took me. The local hospital was a teaching hospital, which I had no problems with at all. Unfortunately,
that meant things took a little bit longer. Terrified, I sat in the waiting room with my mother, the pain
behind my eyes mounting, my vision waning. My mother trying her best to be positive and get a
solution. The time came to sit in the examination room, the first doctor came by and told me he was
going to get the neurologist team to come and see me. So we sat and waited. Then what happened? We
sat and waited some more. After some more sitting and waiting, finally a group of people came in the
room. It was the neurologist with his group of students. There were a lot of people in the room, I don’t
remember how many. They took turns examining me. The neurologist confirms the fear. “It is a
Multiple Sclerosis flare up. We are going to start you on some IV steroids and you’re going to be
admitted to the hospital for 5 days.” My brain went numb and froze again. They all left the room. My
mother came to sit on the bed next to me and the second her arm went around me, I felt the explosion
of emotion. The tears ran down my face as I sobbed into my mother’s arms, unable to form words. I
had never been admitted to a hospital before, I didn’t know what to expect but there was an even bigger
problem. I looked to my mother, tears on both of our faces. In between sobs I was able to articulate one
sentence. “Mom,” I sobbed, “The worst thing about all this is just simply the fact that I can’t even tell if
any of my doctors are cute!”
She couldn’t help it, my mother busted out laughing. The tears slowed as the laughter increased.
The tension was eased, I knew I wasn’t alone. Over the next 6 months MS hit hard and fast. I was 29
years old and was having bladder incontinence, I had to go stand in the store and buy adult diapers for
myself. I might have stood there staring at them for 45 minutes before I had the courage to buy them.
My first year of diagnosis I spent 63 days hospitalized, not all in one shot. I have a lot of stories about
being in the hospitals, there was a running joke in my family about how to tell if a hospital is any good
by their mashed potatoes (I had a rating system). I’ve even tried to spice up a visit by pretending my
hospital bed they were wheeling down the hall for an MRI was a race car, those are stories for another
time. Over all it was scary how bad MS was completely changing my life. Then came the worst blow:
my legs became weak. I couldn’t walk without falling down. I ended up with a wheelchair, inpatient
physical therapy and a walker. My life was never going to be the same. Through years of physical
therapy I only need the wheelchair when doing something like going to Disney World (which I do a lot
because I live in Florida and I can), I need to use a rollator walker daily, especially at work so I don’t
fall down. I can walk short distances without it. When at the grocery store, I’ll walk into the store and
use a cart for stability. Sometimes I have something called foot drop. What does it feel like? It feels like
wearing a pair of swim flippers on land while attaching a fifteen-pound weight to them. While this
doesn’t happen with every step I take, it happens often enough to need a rollator walker frequently. So
it happened that I went to the store the other day, I was having a good day. The pain was minimal, my
walking was relatively normal; however, I still used a disability spot to park. Each step takes energy
and while it may look like no big deal, each step is painfully and completely planned out. So the person
who left a note on my windshield might have been well intentioned but it was a painful reminder of
being judged unfairly. I then get to thinking, why me, what did I do wrong? Instead of feeling rewarded
and proud of myself for looking “normal” I felt shamed.
There is a collective “we” in the universe. Most of us are taught at an early age not to judge a
book by its cover. This lesson is important so that we can know that it’s not what is on the outside but
what is on the inside that counts. So is it wrong to get annoyed at the person who looks like they are
walking okay but parked in disability? Sometimes the annoyance is justified. People do abuse others
disability parking access but that doesn’t mean it’s everyone. Some people take it into their own hands
to shame people they don’t think should be able to park in a disability spot. No disability is the same
and at any given time some people who have MS could be having a good day and then out of nowhere
symptoms can arise. No one should ever feel the need to justify themselves. I know what you are
wondering, “But how does this story end?” I often wonder the same thing. There isn't an ending to this
story. The battle against invisible illness will plague me forever. It is very easy to get lost in feeling
alone within chronic or invisible illness. The important thing is no one is alone, now you are with me in