Photo by: Alkan Emin
Several months ago, we were touched when a customer reached out to share her story with us about her MS, and how much our products had helped her. We ended up chatting with her for a while about her experience, and, in follow up research, learned that UI is an issue for 80% of women with MS.
We needed to know more.
We’ve since heard from many other customers about their experiences with MS, and we sought out a conversation with the fabulous Ardra Shephard -- internationally renowned MS advocate, author of blog Tripping On Air, and unofficial rollator supermodel in her Instagram.
Join us as Ardra shares with us her experience with MS and what we can all learn about facing the challenges of our own often stigmatized struggles with our own health - be it chronic illness or otherwise.
Q: Ardra, could you briefly describe your journey with MS? When was its onset and how has it progressed?
A: I was diagnosed in 2001 with relapsing remitting MS (RRMS). My first symptoms were vision loss, hearing loss, some numbness and balance problems. For many years I had dramatic recoveries between worsening symptoms until I settled into secondary progressive MS (SPMS) a few years ago. I don’t drive and I use mobility aids (cane, a rollator and sometimes a wheelchair) to get around.
Q: What is the relationship between MS and incontinence?
A: Bladder and bowel incontinence are unfortunately very common in MS. It’s one of those “invisible symptoms” and most of us would prefer to keep it that way.
Q: When did you first experience bladder leaks? Did you feel prepared? How did you get help? Who did you go to for advice?
A: Well, it was more than a leak, but I remember fairly early in my diagnosis, peeing my pants at the mall and calling my mom crying from a payphone. I don’t know what year that was or why I didn’t have a cell phone, or why I didn’t head straight home instead of stopping to make a call. I was completely caught off guard and just kind of devastated. I guess I needed my mom!
My neurologist wasn’t overly helpful in treating this symptom (or talking about it) but I was referred to a PhD nurse specializing in bladder and bowel dysfunction. There were tests and trials with different medications, but nothing was helping and I was getting side-effects from the medications. I was also experiencing lots of urinary tract infections (UTIs). My bladder problem was creating major anxiety for me at work as well as in my personal life.
After peeing the bed one more time than I could handle, my doctor and I decided to try intermittent self-catheterization. I was terrified and horrified, but at my wits’ end and desperate enough to try anything. Catheterization turned out to be one of the most liberating decisions I’ve ever made. “Cathy” became my new best friend and I wanted to spread the word. Part of why I started my blog Tripping On Air was because I wanted to de-stigmatize continence care and to make it less scary for women going through the same thing I was.
Q: What advice do you have for women about having uncomfortable candid conversations about their changing needs?
A: I always refer to Nora Ephron’s genius. She said something like “When you slip on a banana, people laugh at you; but when you tell people you slipped on a banana, it’s your laugh. You become the hero rather than the victim of the joke”. Replace slip on a banana with pee your pants at the mall and that’s how I tell my story. It’s about owning your own narrative. Because it’s not just about being able to talk to your doctor, if you have to negotiate continence care, it’s going to come up in your personal life, and you need to be able to communicate what you need without shame.
That said, it’s not okay for the able-bodied mainstream to make incontinence a punchline. A big part of why bladder dysfunction is so hard to talk about is because of stigma. I’m not about censoring comedy, but these kinds of jokes “punch down”, and we’ve all heard them by the time we’re 10 years old. Like, be smarter. Be funnier.
Not everyone has to put their continence journey on the internet for their worst enemy to find, but maybe seeing my story, or someone else’s, will let you know you aren’t alone. The issue gets normalized. But, doctors, please check in. I mean, that’s your job. Especially if a patient has MS, doctors need to ask at every visit so that the onus isn’t on us to bring it up. I’ve written about bladder issues and MS and had women comment that they had no idea this was related to their MS. That’s unacceptable.
Q: You’ve been a shining light for so many - bringing awareness to MS and its struggles, representing disability positively as a part of a life lived fully and fashionably, and empowering those with chronic illness to stake their place in the world. What has this journey of being an influencer and advocate meant for you?
A: I don’t want to be gross, or too self-congratulatory, but I feel like this is the most important thing I’ve done in my otherwise vain and silly life. Every time I hear from someone who says they feel better about using a mobility aid because of something I’ve said, I feel overwhelmed with gratitude to be able to have this kind of impact. I know how much of a mind-fuck (can I say mind-fuck?) adjusting to disability can be, and if I can help someone come to terms with that with their sense of self intact? It’s an awesome and humbling feeling.
Q: We’ve been following Selma Blair’s MS journey, touched by her struggle, and swooning over her fiercely sartorial canes. Where and from whom do you take inspiration in your own journey?
A: Social media is changing the fashion landscape. The gatekeepers of style who’ve historically been the ones to tell the rest of us what’s cool, are finding themselves having to pivot and adapt to a growing appetite for more inclusive and diverse examples of what’s considered beautiful. In 2017 I couldn’t find any images of people my age using mobility aids that weren’t part of a pamphlet or a fundraising campaign. Now with hashtags like #babewithamobilityaid there are tens of thousands of images of the infinite ways there are to be human. I’m inspired by everyone who is able to celebrate and lean into the thing that makes them different.