Multiple sclerosis is one of the most unpredictable diseases there is, especially when it comes to young people. Symptoms vary widely, and the time it takes to progress can be long or very little at all.
A difficult condition to understand
In large part because it shows up so differently for so many in the community, it’s a difficult disease to understand. But, anyone living with it most likely relates to certain truths about the disease, including how it disables someone fully, but only part of the time.
In his piece, ‘This Young Disabled Life,’ author Devin Garlit sums up his struggle with MS, and his words hit home with many in the MS community.
We reached out on the MultipleSclerosis.net Facebook page, asking if anyone in the community could relate to Garlit. More than 300 reacted to the story, and more than 100 members commented.
Here’s what they had to say.
“The words, ‘I am disabled because I cannot do things consistently’ hit me hard.”
Many of you were struck by the accuracy of Garlit’s definition of disabled. Yes, you’re not physically impaired 100 percent of the time, but, on any given day, the disease can leave you unable to participate in life to the extent you want to. It’s debilitating and not on a schedule, making it hard to show up. If only more people took the time to read Garlit’s piece to understand how MS can affect a person—and that just because there are good days doesn’t mean that that is what reality looks like all the time. If only!
“Wow… in many ways, this is my story! The words, ‘I am disabled because I cannot do things consistently’ hit me hard. Thank you, Devin, for putting into words how I feel on a regular basis.”
“I feel so much better having read just the opening statement. ‘I’m disabled because I cannot do things consistently.’ OMG, so simple.”
“I do feel the loss of the work.”
For those who haven’t been forced to leave work, it may seem like a dream to not have to work—but that’s far from the case. It’s incredibly tough to not be able to make the income you had been, and harder still to feel a sense of purpose if you’re not working. In Western countries like America, it’s especially hard to not work as so much of our personal worth comes from a job. But, hopefully, everyone reading this is able to make ends meet, and find their sense of purpose or value somewhere else—perhaps through volunteering, connecting with a community, creating artwork or taking good care of a pet. We all provide so much value, independent of any job we may have or have had.
“This resonates with me since I have been unable to work since 2007.”
“This is me, but I don’t want to give up yet. Still working three days a week when I can manage it.”
“I do feel the loss of the work and drive capabilities.”
“The jealousy part is oh so true.”
Life looks a lot different with MS, so it makes sense to occasionally be jealous of those who aren’t dealing with the same struggles. With MS, it’s easy to feel like you’re missing out on so much of life—when fatigue and mental fog keep you from feeling anywhere close to 100 percent. Making it worse is that now with social media, many of us are subjected to the photos of everyone’s vacations, parties and the like. It can be hard if we compare our lows to someone else’s highs. Perhaps it’s a consolation knowing that most people’s lives are nowhere near as happy or perfect as they appear on social media, or as they share about in person. The trick is to remember we are each just living our own lives, so it’s about living your best life for you—whatever that looks like.
“The jealousy part is oh so true. It’s very hard to be around people who can go on endlessly about their vacations, their marriage, their job promotions and all of it. I just sit there with a half-hearted smile and wish I could relate.”
“It’s nice to know that I’m not the only one who occasionally feels jealous of those who can do things without a thought. Before my diagnosis and the obvious progression, I took my abilities for granted. Now I can only hold memories of them.”
We wish to say thank you to everyone who shared about their experiences with MS. Thanks to you, this is a community where others can relate and find support and encouragement. Thank you.