Chronically Joyful

When I was first diagnosed with Multiple Sclerosis, I felt such a deep sense of shame in being “different” that I didn’t want anyone to know. As a Business Administration major in college, I ran into more reasons to hide this part of myself away from the world. 

I was taking Business Law II (a course I actually LOVED) and my professor, who I respect very much to this day, called on me specifically to read a case study about a man who was unjustly fired from his position because of the implication of “medical expenses” his wife would incur for the company due to her MS. My professor looked me right in the eye after I finished reading and simply said, “remember this.” Bless you, Dr. Kistler, you were really looking out for me. 

Medical expenses in general are enough to scare me into not wanting to officially “declare” that I have a Chronic Illness; it took me 4 years to do so at my corporate job in fear that my insurance premiums would skyrocket. The joys of pre-existing conditions continue to shine. 

Aside from officially “declaring” that I have a chronic condition on paperwork or at my day job, there is also the aspect of admitting this part of yourself in every other arena of your life. It wasn’t always easy to be so open to admit that I have MS, but in realizing how much it’s helped others over time, it is now just a standard part of my life. Like everything involved with chronic illnesses, living with MS is a giant paradox – 

I don’t want you to treat me differently than anyone else 

I need you to give me some grace on bad days 

I am proud to be living so abundantly while also managing a chronic illness

I often feel less than because I am different than everyone close to me 

Everything is ultimately a choice in life. I choose to share my story in hopes that it helps others feel less alone, but there are many people in my circle who elect not to share because of the potential implications. Neither choice is “correct” and should be decided from a standpoint of what feels right for you specifically. Being so open about it, I’m absolutely the person who made my own tank top I proudly wear in the gym for all to see, but find myself making lame excuses when approached. A recent example was the sweet employee at the front desk catching me squatting with horrific form and providing unsolicited (but warranted) advice; in a moment of both shame and pride as someone who has been going to the gym for over a decade, I quickly replied with, “being off balance is fairly normal for me, I have MS.” I instantly cringed and just shook my head at myself as she walked away. Yes, I’m open about my condition, but I shouldn’t be using it as an excuse for crap form or bad behavior. I talk about this in more depth in a few of my videos on my Youtube Channel, if you’d like to spend some time with me there to keep me accountable! 

I have felt incredibly privileged in the realm of chronic illness and disability because my illness truly is invisible over 90% of the time and it is mostly well-managed; I do not have to experience the hardships others do in blatant discrimination or unfortunately even threats of violence. My personal experience lies more so in the ignorance of others – in how publicly I share about my MS, I am always open to questions from folks who just may not know much about it, but it doesn’t make it less awkward from my standpoint. 

“You have MS? How did you contract that?” 

“When is it going to get better?”

“Aren’t you over that yet? What’s the recovery period?”

“You’re using a walking stick, did you have an accident?” 

“If you can’t hold the yoga poses in my class, you will fail.” 

I could go on, but I’ll spare you. Where things get very interesting is on the complete opposite side where I’ve had the internet trolls creep out from under the bridge who also live with MS, but survive off of reaping misery. 

“Who are you to speak on this topic if you’re doing so well?”

“How are you qualified, you don’t even look sick.” 

“Look at you, I bet it’s never once been hard for you.” 

“No one wants to hear your story because you’re able-bodied.”

The internet is a beautiful, wild, horrible thing LOL. Folks living with a chronic illness have enough worries on their shoulders, we don’t need the naysayers on either side of the coin giving us more to think or worry about. 

For those out there brave enough to share their experiences and put everything on the table, that should be celebrated! Whether amongst friends and family or also in a broader scope of declaring officially at work, it isn’t an easy choice to make and the impact it can make for others experiencing something similar is incredible. 

For those out there brave enough to “suffer in silence” and keep that particular aspect of yourself hidden, you are empowered to do so. My only hope is that you never feel inclined to lie about your condition to placate anyone else’s comfort box – you deserve to be here fully and authentically as yourself! 

So whether or not you choose to personally disclose your condition or circumstances to anyone else around you is completely your choice. I just send you all of the light and love to make that choice from an empowered, authentic state that feels right for you. I would love to hear from you in the comments below as we come together to make this world a beautiful, accepting place for every BODY (hehe, get it?). 

As always, thank you for remaining Chronically Joyful with me. ♡