It’s hard enough to figure out how to adapt to the ever-changing business environment, but dealing with a chronic illness and forging a successful career just adds more to the challenge. Yes, it’s difficult, but not impossible. And while I’m still figuring it out, I thought there’d be some value to sharing what has helped me along the way.
Be honest with yourself and others around you
As far back as I can remember having symptoms of Muscular Dystrophy, I remember hiding it in a professional setting. I have a very rare disease called Limb Girdle Muscular Dystrophy Type 2i (LGMD2i) that, over time, weakens muscle groups (in my case hips and legs).
Things started to change when I was in my early 20s, I was touring with musicians and coming up with excuses why I couldn’t carry gear upstairs very well despite being a normal, young “healthy” person. I had no idea what was actually wrong. At that age I reacted to it the same way I treated a “check engine” light on the car dash – ignore it until something actually happens.
My first job felt more like being “in a band” than working an actual job. I had incredibly supportive teammates and I’m thankful and we spent a lot of time together building a great culture, but I’d still hide my symptoms whenever possible. I would just say my knees felt weak or that I was still suffering from an injury I got as a kid.
Eventually, with a proper diagnosis and a desire to remain independent and active, I started using a cane. Even with that, I would hide it during work as long as I could.
As I thought more about it, hiding this sort of thing doesn’t help anyone. In fact, it probably does the exact opposite.
There’s no shame in asking for help
I’ve found that the more open you are the better. There will be things that seem like common sense to you that other people have never thought of. It’s usually not their fault. A former colleague of mine who uses a wheelchair told me she was interviewing with a very large online media company recently whose office only had stairs. I couldn’t believe that.
Hopefully, being more open about how to make every workplace as accessible as possible will make stories like that less common. And while it’s possible to feel sheepish or even a little guilty when requesting some extra help, it’s important to try and get past that.
Getting past the mental hurdle of appearing “lesser than” because of what I was dealing with was incredibly challenging. Some days it still is. But when you have a chance to educate your peers and superiors on a very rare disease (and help them appreciate their own situation more), it’s tough to look at that as anything but positive.
This goes for everything and everyone: If you need help in anything at all, you’ve got to ask for it.
This might seem like a stretch when you’re dealing with something as serious as physical limitations, but I’ve definitely found that having to figure out creative ways to adapt to my environment has helped me be more creative in the way I think about and approach a work project.
Also, when you have to figure out how to maximize your effectiveness while navigating chronic illness, it can make a challenging work project seem a little less daunting.
Not to put down the line of work I’m in, but we’re making media and (hopefully) entertaining people. It should be less stressful and come a little easier than managing symptoms and adjusting to new challenges due to your health.
Facing the “is this worth it?” crossroads
I am plugged in with the amazing community of LGMD2i patients that are soldiering through this disease every day with me. There aren’t many of us, but we’re spread all across the world living extremely different lives. We all support each other at any chance given.
I remember someone posting in our Facebook group asking about how people “still work” with the disease. Some had dedicated their lives to working in medicine – helping others, but their physical limitations made that almost impossible to continue, while others were able to carry on, and so the results were both encouraging and upsetting in equal measure.
It makes me realize that I chose a creative path that this disease has slowed a bit, but I’ll do everything I can to make sure it doesn’t stop me.
Give yourself and your health attention
This has been tricky for me. It’s probably a bigger conversation about how, especially in America, we tend to put earning a living well in front of living well, but taking care of yourself is beyond important.
There’s a layer of guilt that I (and many others) have definitely felt when you put work on the back burner because of something personal. You feel like you’ll fall behind. You’ll feel high-maintenance. It can be tough to move past, but take care of yourself. There are a lot of jobs, but you only get one you.
I’ve learned how to disconnect and take care of myself again. Hopefully writing this will serve as a reminder because I’m not claiming to have mastered it, it’s a struggle that rears its head again and again.
Keep falling, but keep getting back up
I’m thankfully in a place now where I’m comfortable asking for reasonable accommodation and working with high EQ management that empowers me and challenges me in all the right ways.
Just like dealing with this disease. Picking yourself back up literally helps with getting back up figuratively as well. In that way, I’m sort of lucky. I don’t have the answers for everything, but one thing’s for sure – I’ll keep trying to find them.
While I miss that feeling of being “in a band” and having my career more on my own terms, I know if I keep learning and growing, there’ll be plenty more “this is really cool and I’m getting paid right now” moments to come.
Want to know more about CureLGMD2i?
Check out the following link for more information on the work they’re doing: https://curelgmd2i.com/