Well, acceptance was finally starting to sink in. Yes, I have MS, but it doesn’t define me.
As time went on, my research about the disease sent a whirlwind of emotions my way. I came across terrible stories about people who were permanently bedridden from MS, people who could no longer play with their children because MS took such a toll on their bodies. But, I also read about people who were still running half marathons with it. People who were living completely normal lives, even some going as far as to go on without even taking meds to control its progression. Then I had a major realization that drastically shifted my thinking: MS isn’t a death sentence. I have it, but it damn sure doesn’t have me. I could sense the incredulousness I felt when I first heard the news a few years earlier slowly but surely dissipate.
Quietly and boldly, I stepped into my new reality. I say quietly because while I was okay accepting the new me, I wasn’t yet willing to talk about it with many people. I accepted it silently, only sharing the diagnosis with my closest friends, my parents, my siblings and D. In my mind, this was MY battle, MY life, and I was going to own it because, well, I had to. My new mindset didn’t prevent the teary-eyed days, though. Especially those mornings when I would feel fatigued or the days when being in the hot sun, my favorite place, were no longer enjoyable the way they used to be because the heat wears my body down.
Accepting my new reality also didn’t stop how others would occasionally insensitively respond to my news. “I know someone who has that, they can’t see anymore.” Oh, great! So nice of you to share that! Or, when people try to convince me that certain treatment options will cure me. “I heard about this diet that this woman I know uses and she’s cured!” Ma’am, please. I’m not that woman and her story isn’t mine. Now, I will research that diet, but stop insisting it’ll cure me. MS looks different on everyone.
If you’re curious about how you can be supportive of someone you know who has MS or, are just wondering what you should and shouldn’t say to an MS patient you meet, here are some things. Keep in mind, these are MY “don’ts.” Some people might not care if you immediately say, “I’m sorry.” But I’m also sure they wouldn’t shed a tear if you chose a more encouraging response than an apology.
1. Don’t apologize
I hate, hate when people reply to me telling them I have MS by saying “I’m so sorry.” I know it’s the kind and intrinsic response to give but in my mind, I didn’t ask for this shit nor did I do anything to deserve it. It’s no one’s fault that I have MS. I mean, doctors still don’t even know how people get it. Instead of apologizing, commend my courage for sharing it with you. Even though I’ve had it for almost a decade, it still takes a lot for me to tell someone that I’m living with this unpredictable, incurable disease.
2. Don’t reply with a traumatic story about MS
I loathe when I reveal that I have MS to someone and they immediately reply by telling me a story about a friend’s brother’s wife who had it and now can’t feed herself. There’s nothing comforting or considerate about that. Keep the crazy stories to yourself so I won’t have to curse you out in my head.
3. Don’t downplay what I’m experiencing
A few years after my diagnosis, I started noticing things changing like my balance. I would vent to my mom about it sometimes who would reply and say, “that happens to me too.” I often grew frustrated at that reply because it made it seem like what I was experiencing was not related to my MS when, in fact, it was. I know my body better than anyone else, I know when something doesn’t feel right or when I’m experiencing something for the first time, just like I did when I developed optic neuritis. Trust my words like I trust my body.
4. There isn’t a cure for everything I’m dealing with
When I would tell D about my fatigue, his gut reaction would be to hand me a cup of coffee. But, this fatigue can’t be cured with coffee. Or, if I tell him I’m feeling a bit dizzy, he’s quick to toss some Gingko Biloba my way. Also sweet but, not a cure. Instead of finding a solution, I expressed to D that sometimes listening and just being present is the best care. If I’m feeling fatigued, lay next to me and rub my back then, after some time, offer to go with me for a walk outside to get me moving so I don’t succumb to what I’m feeling.
5. Check in every once in a while
The hardest part about having MS is having a steady, reliable support system. My mom and my husband are the only two people who regularly check in and say “How are you feeling?” Does that make those who don’t check on me bad or inconsiderate people? Absolutely not. People have their own lives and crap they’re dealing with. But, if we talk 3 times a month, use one of those convos to throw in a “How are you managing your MS?” I don’t advertise my flare ups but if you ask, I’ll tell you. Is there anything you can do? No. But you inquiring means more than you’ll ever know.
This July marks seven years since my diagnosis, but the fall marks 8 years since my first flare up. For the last 2 years, close friends have encouraged me to tell my story and, out of fear and not wanting pity, I held off. But, I promised myself that 2019, the year I turn 30, would be my time and I can happily say, I did it. Albeit, not without the support of countless people. I would never be where I am today without my amazing parents who check on me routinely. Every morning I’m greeted by a “Good morning, Jenna” text from my dad and every afternoon, my mom texts me asking how I’m feeling and that she prays I’m full of energy. They’ve been there for me from the start.
To D, gosh. Where do I begin? Your courage, thoughtfulness, generosity, strength have been more than I could’ve asked for and more than I deserve. You’re truly my rock who has taught me patience, emboldened my resilience and have never pushed me to tell my story. Instead, you stood by me, regularly reminding me that this story is my own that I should tell when I’m ready. Thank you for everything, always.
To my friends, old and present colleagues, thank you for your support. For joining me at doctor’s offices to take notes for me (thank you, Jodie!), to sending me scriptures (thank you, Ryan!), to drying my tears, I’m forever grateful for your selflessness and kindness.
If you made it to the end of this series, I appreciate you for reading my story. I’m Jenna Morrow, a lion hearted 29 year old woman from Philly who loves reading, home decor and writing. I have MS and I’m bruised, but I’m never broken.