Three Things I Wish I Had Known At The Beginning Of My MS Diagnosis

On July 22, 2012, 10 years ago, exactly 100 days before my 30th birthday, I was sitting in the Emergency Room waiting to find out what was going on with me.

Two nights earlier, we had been at the county fair and I was having trouble walking. It had started earlier that day at work. My leg and foot kept not picking up all the way and I was stumbling around the office. I also had patches of my leg feeling like it was asleep- that painful pins and needles feeling you get.

That night at the fair, my walking speed had slowed down substantially in just a few hours. I was thankful that I had my kids stroller to hang on to as we wandered around. Eventually, my husband said it was getting late and we should head home to put the kids to bed but we both knew it was really because of my walking.

I went to urgent care after work on Friday. The doctor poked my leg and said he didn’t know was going on but to make an appointment as soon as possible with my Primary Care doctor. However, by Saturday morning, when I heard my son crying, I went to stand up from my bed and I completely faceplanted on the floor. When I tried to stand again, I realized I couldn’t feel my left leg at all. It wasn’t asleep. It was like I no longer had a leg. I couldn’t feel anything.

Back at the hospital, because I had no feeling on my lower left side, they ordered a CT scan to rule out a stroke. When they wheeled me back to my waiting room, the nurse said they also wanted to run a MRI but that it would be quite awhile because they had other people scheduled for it first. She came back within 5 minutes and said that they would be taking me NOW. I knew that meant they had to have seen something on the scan. My thoughts immediately went to brain cancer.

I won’t bore you with the rest of my hospital story. I was very fortunate to be diagnosed with MS as fast as I was. It can take people years to confirm a Multiple Sclerosis diagnosis.

Image: Sarah in 2012. She’s been home a day from the hospital and is trying to figure out how to “rock” this walker.

Here are 3 things I wish I would have known as a newly diagnosed MSfit (a person kicking ass and living with Multiple Sclerosis)

#1- If People Offer You Help, Take Them Up On It.

I was in the hospital for 4 days before they let me go home with steroids and a walker. My parents were on a cross country road trip. They had wanted to turn around to get back home to me but I told them to stay on their trip. My Mom still has self-induced Mom-Guilt about not immediately coming home. In their absence, I had a handful of Aunties who came and sat with me and loved on me everyday I was in the hospital.

One of my Aunts was sitting with me one day, when she offered me the best piece of wisdom: When people offer to help you, let them.

She explained that it helps their heart just as much as it helps yours. It might just be a casserole, but to the person offering it to you, they have taken the time to think of you, to think of a way in which they can help you, and they’ve taken the time and energy to help you in a way that they can. She put it much more eloquently than I am now, but I took her advice to heart. Anytime someone has offered me assistance, I answer them honestly, instead of just saying “I’m fine” when someone asks. Over the years, I have accepted help in ways I would have been too proud or embarrassed to if I hadn’t been given this advice.

Image: A blue and orange wreath Sarah made for MS Awareness month with a sign that says: “In this family no one fights alone”

#2- Take The Time To Mourn The Old Version Of You

As a person living with MS, who occasionally rocks a variety of walking aids, can I tell you what the most annoying thing is about how people act towards me?!

There are 2 actions by others that make me super annoyed. It’s a tie because they both suck and both happen to me often enough, that one can’t be worse than the other: A) People rush to beat me to a door so they won’t have to hold it open for me AND B) people often talk LOUDER to me when they see me in my walker. On days I am feeling particularly snarky, I always tell them I’m not struggling to hear them because my ears work just fine.

One of the things that I did wrong in the beginning of this journey was not taking the time to really explore what being diagnosed with an incurable disease feels like. Multiple Sclerosis has one of the highest rates of depression among neurological disorders.

When I left the hospital, I was told maybe I would walk normal again or maybe I would always need a walking device; there just wasn’t really anyway to know except to see what happened.

This was terrifying. I had two very young kids and I couldn’t even start to think of how sad their lives would be having a Mom who couldn’t keep up or do things with them. There is a stigma about having a disability. The ableism that is built into our everyday lives is so engrained in our culture, that even you might not realize how much crap you are talking about yourself. Adding to it, is that there is a ton of outdated information out in the world about living with a disability. For example, you will not automatically end up in a wheelchair if you have MS but society still tells us you will. Many people are able to have functional lives with medications or physical aids. MS is not a death sentence.

When people would stare at me with my walker, I felt their discomfort. I learned very quickly that my presence, a young person using a walker, made other people very uncomfortable. I immediately learned to make jokes about my situation, to make other people laugh, so we could change the subject to something other than poor little me.

In doing so, I hurt me the most.

I took all those unbearable feelings: sadness, shame, depression, pain and I buried them deep, deep inside of me. When I went through the process of applying for Disability and I had to “prove” over and over how disabled I was in order to qualify, I spiraled even more into darkness. Eventually, after a very scary incident, I finally started seeing a therapist and was put on anti-depressants so that I could really work on these huge emotions I was going through daily for years. In addition to therapy, I started looking for people going through the same thing as I was.

#3- Find Your People

I am a super extroverted person. I need social interaction to feel joy. I’m not exaggerating. There are days my husband barely has time to walk in before I meet him at the door talking a mile a minute about the groceries I bought or the memes I saw online today. In 2012, I was home all day long with two kids under 3. I needed adult interaction but also I was looking for MS connections.

I started looking online for MS groups/ people on FB and IG to talk to to who could understand what I was going through. Since then, some of my very best friends are people I have yet to actually meet in real life. I have met my British Bestie, my Homie, my friend who is a Marketing guru, numerous people knowledgeable about whatever I am trying to figure out in the moment (blogging, gluten free, etc.). I have “met” so many other people who have been where I am and people who are newly diagnosed looking for support. So many of these people know things about me that I would only share with my closest friends because these people have become MY people.

Image: Walk MS 2020 surrounded by family and friends in a socially distanced way

Special Shout Out: I do have a MS Fairy Godmother that I am very close to. She is local to me so I have been able to give her hugs in real life. She is my cousin’s former boss and when my cousin told her I had been diagnosed with MS, she immediately text me and told me to reach out anytime if I had questions or needed advice or whatever. She has supported me literally since day 1, ten years ago and continues to do so.

Bonus #4- Get Involved

I have found great joy in getting involved with MS events and projects. It really helps me feel like I am fighting back against my MS in a tangible way.

I joined Walk MS the year I was diagnosed as a way to distract myself from all of those dark emotions I was talking about earlier. The National MS Society does so much for people living with MS. As the years have gone on, I’ve gotten more involved with the MS Society. Currently, I am a District Activist Leader which means I meet with federal and state legislators to share my story and ask them to support policies that the National MS Society is working to get passed, like lowering prescription drug costs for patients. The National MS Society also is the largest private funder of MS research. They fund High Risk/High Reward projects that might not otherwise get funded for being too audacious.

Image: A picture of Sarah at a virtual Public Policy Conference because of Covid Precautions

Hopefully some of these suggestions can help you on your journey of living with MS.

More than anything, I hope you find the people that can help pick you up when you’re down, the people that have answers to your questions, the people who totally get that MS sucks. Feel free to reach out to me on social media if you need to.

Remember, there is no time limit to how fast you have to figure out what you’re feeling about living with MS. You don’t have to accept it by a certain date. You don’t have to have all the answers right away. I think the most important thing is to be honest with yourself about HOW you’re feeling about it good or bad.

With luck, maybe some day, you will feel like you could help light someone else path as they try to navigate living with MS.

P.S. I am firm believer in celebrating my MS Diaversary as a celebration because even though MS can suck, it has brought many opportunities to my life. I’m signing off now to go to my favorite cupcake spot to buy a GF cupcake to celebrate living with MS for 10 years!

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