MS is Canada’s disease with 11 new cases diagnosed daily. Everybody knows somebody with MS, but only a small number can actually articulate what the disease is. Having a disease, in and of itself doesn’t make someone inspiring. In fact, we put so much pressure on people with serious conditions to make it OK for us, that it can be challenging for them. We recently spoke with Ardra Shephard whose blog, Tripping On Air: My Trip Through Life With MS recounts her highs and lows with the chronic illness. She is a leader in the MS Community and is also an acclaimed writer and Instagrammer. She was named one of the top MS bloggers “in the universe” by feedspot.com, and Yahoo Lifestyle reported that @ms_trippingonair is the number one chronic illness account to follow on Instagram.
Ardra’s symptoms began with a pain in her right eye and a visit to a walk-in clinic 19 years ago. It was misdiagnosed as a migraine. Two weeks later, her vision blurred, she saw a neurologist and began her journey with MS. She was in her early twenties and just starting out in life. In that way, she was a typical young adult. Getting diagnosed at such a young age threw a wrench into a life that she was just beginning to figure out. Then, suddenly, all of the hopes and possibilities for her future felt much more limited because she just needed to figure out how to cope and survive.
We selected Ardra as our latest #WomenInspiringWomen, because she speaks about MS in such an authentic way. She doesn’t sugar-coat what it means to have the disease and makes people who are able-bodied confront their own biases. She also changes the conversation on what MS should look like. If you haven’t checked out her blog or followed this fashionista on Instagram, you really should.
In the meantime, read more about her story below.
Talk us through how you coped with your MS diagnosis?
It started with comfort food and a lot of crying. I felt like my life had exploded. I had just left home, but then, in the first few months, I moved back in with my parents. I needed help because I could barely walk. It was a scary time, but it’s human nature to figure out how to survive quickly after we get devastating news. It’s not long before we start asking “What can I do to make this better?” and it wasn’t long before I started researching how I could do this for myself. Thirty pounds later, I put down the comfort food and started focusing on what I could do to protect my health.
What were some of the things that you learned to help you cope with MS?
When you are diagnosed and have an attack, it’s not unusual to be given heavy doses of steroids, which I was. That led to significant weight gain. About eight months after my diagnosis, I traveled to France on a vacation and stayed with a family that I had lived with when I had studied there. They presented me with hope. They gave me this book on natural healing. If somebody tried to give me that book now, I think I’d be really annoyed. It’s toxic to suggest these kinds of cures to somebody that’s been diagnosed. At the time though, I really took it seriously and had my “last meal” in France.
I took the book home on the plane even though it had to have weighed 25 pounds [laughs]. It was written by a doctor who talked about healing chronic illness through a very strict diet which I adopted immediately. I dropped the steroid weight and felt better. That was my first foray into natural health, but I definitely don’t want to give the impression that diet cured my MS. It’s a relapsing/remitting course and there are a lot of factors that go into that. I was raised on processed food like margarine and Tater Tots. This was my introduction to food as medicine and it kick-started a change of habits for me that has been modified over the last 19 years. It was the start of a different way of using food as medicine or as something that could be therapeutic, in a healthy way, not just as a source of comfort.
MS is challenging because a lot still isn’t known about it. Everyday people still don’t know much about the disease and everyone’s symptoms present differently. What did you know about MS and what frustrations have you dealt with in explaining it to others?
I didn’t know anything when I was diagnosed other than it was bad. I probably thought that I might die – it felt very serious. In the first twelve years after my diagnosis, it was frustrating explaining it because I looked so young and healthy that it was hard to be taken seriously if I needed accommodation or just to be understood. It’s hard for people to not believe what they see or to hold two thoughts at the same time – she looks good, but is also sick. It was hard at work or from an energy level perspective not being able to keep up. It’s psychologically damaging because when you are trying to stay positive and focus on what you can do, you really have to hammer home what you can’t do when you are explaining it to someone. It’s hard emotionally and mentally to have to convince people that you are not well when that’s not how you want to be perceived.
Now it’s a different frustration. I don’t explain my condition to random strangers anymore. As women, we are raised to be polite and answer questions and that’s what I did in the beginning. You are often caught off guard and don’t have a prepared answer, but now I’m much more protective of that with nosy randos. I think the blog has helped me more than anything explaining what my deal is to everyone in my life. I do think that bit by bit, chronic illness and disability is getting much more attention, even just in the last year. The world is getting more sensitive to different marginalized communities. We are starting to learn what is an appropriate question and what’s not.
What type of support system did/do you have?
I left home when I was seventeen, but as mentioned, I moved back in with my parents at the beginning of my illness. Being independent and living on my own was highly valuable to me and I couldn’t wait to move back to my apartment. Like many patients, I intuitively sought out others who were experiencing the same thing that I was. You need to have family and friends, but it is essential to connect with somebody else, preferably somebody in the same life-stage that you are. That was much harder to do 19 years ago. I did manage to find a couple of other girls that were around my age and we would meet once a month, have wine and just talk about shit. It was so important and continues to be. It does take a team for sure.
You’ve spoken openly about “Cathy” [the catheter] – and other tools that have been helpful with MS – why?
It’s disappointing that these tools are still the butt of a joke. Saturday Night Live still makes jokes about continence care. These are tools that liberate us and we are reluctant to use them because there is so much stigma attached. The same is true of mobility aids and that is why I am working hard to normalize things and change the narrative about what we think disability is and what it looks like.
You are a reluctant spokesperson thanks to your blog. Why did you decide to speak so candidly about your condition?
Any reluctance that I once had was a direct product of my own internalized ableism; my belief that having my name associated with disability and disease would put me in this category as “one of them”. A category that people pity, patronize and ignore. It’s true that people with disabilities are often treated as second class citizens, but there came a point when I decided that I wasn’t going to let the outside world define who I am as a disabled person. If I just kept quiet, then I was buying into that. If we want the narrative to change, we have to be willing to put our hands up and start setting the record straight. So, I am no longer reluctant – I put my hand up and claim this disabled identity because it’s not true that we are less than, and somebody has to say it.
You are refreshingly candid about admitting the disease has you and you don’t sugarcoat the impact that it has on your life. People with chronic illnesses are often given the added pressure of being made into heroes because of their condition. How do you manage these expectations?
This is part of ableism and it’s an “ism” that most of the world doesn’t realize is an “ism”. There are so many factors that contribute to how people with disabilities are expected to behave. When you are repeatedly told not to let this disease change or define you, the message is that your identity is a very unpalatable thing and you should hide it. The message is that people don’t want to hear about it unless you are defeating it or overcoming it and that is about making other people feel comfortable around your disability. It is problematic because as long as we are overcoming shit, there is no pressure to be more inclusive or to make spaces accessible or provide jobs to people with disabilities.
I remember my first appointment when my doctor told me that there was a 50% chance that I had MS and I was devastated. My next appointment when I was actually diagnosed, I remember cracking jokes because even at that young age and even after officially having this disability, I instinctively knew that I had to make other people feel comfortable, even my doctor which is crazy. I can still see his face falling when he was telling me that I have this disease and I’m cracking jokes. There is this pressure to let other people know that you are OK.
In reference to this hero bit, when somebody without MS tells me that I am their hero, just because I have MS and don’t want to kill myself, the subtext is your life sounds unbearable, I could never live your life. That isn’t a compliment, it’s actually pity and that’s gross. This is why I believe so much in the power of media because a lot of these ableist ideas and internalized ableist ideas that we have are because of the stories and tropes that we’ve seen and learned about disability. We have seen tremendous changes that impact other marginalized communities in the way that story telling has changed and been more inclusive and authentic for those communities and we really need that to start happening with disability. I’m working on that too. I have a show in development with Shaftsbury Films that features a main character who has MS – and I’m excited about that.
You’ve mentioned that it’s important to grieve what you have lost [due to MS] but you can’t live there. What advice do you have for someone whose life has changed because of an MS diagnosis or because of another disease? What advice do you have for those in a supporting role?
A lot of language around chronic illness is about having this warrior or fighter mentality and culturally, we do everything that we can to minimize and eliminate all kinds of pain. MS doesn’t do all of its damage when you are diagnosed. Every time a new symptom shows up or a disability increases, it can feel like you have a whole new disease and it’s important to acknowledge that. When people with MS and their loved ones pretend it doesn’t suck – it’s unhealthy. It doesn’t mean that we have to be sad forever, but we have to process the feelings. I think the only way out is through.
I remember when I was diagnosed everyone was trying to protect and shield me by acting like it was no big deal. I had one girlfriend break down and cry and that was my favourite response because I felt like was being gas lit by everybody else who didn’t want to burden me with their sadness or feelings. I felt like how can you not see that the world is ending right now? Give yourself permission to feel those feelings and that goes for support people also.
You speak about hope being something that can hurt you with a chronic illness. Explain what you mean by that.
Hope is so complicated and I have so much to say on this subject that it would take all day. The bottom line is that people with MS or any condition really, are encouraged to have hope. Hope for a cure, hope for a reversal, hope that things will go back to the way they were. Nobody wants a cure more than I do but putting all of my eggs into a hope basket doesn’t do anything to hasten that. It keeps me in a state of anxiety because it forces me to wish that my life were different. By definition, MS is chronic. It’s not curable, it’s progressive – by definition, it gets worse. We are not prepared or encouraged to be prepared for that. We are encouraged to prepare for the opposite – to just hope. When things do get worse, you can feel like a failure or even the exception.
Whether you like it or not, you inspire people. Who inspires you?
I’ll take it! If some rando on the street sees me with my rollator, and tells me “your doing great” that’s annoying. That’s not inspiring – that’s me living my life and it’s condescending to qualify that as great. If you have read my blog and appreciate the work that I am doing, then I want to be inspiring. I want to inspire people to feel comfortable and cool with their mobility aids. I want to inspire people to claim their worth, to demand accessibility and better treatment.
I am personally inspired by so many in the chronic illness community. Things are changing fast. There are more and more voices that we just never heard before. For me, it’s just seeing people who have lived with the disease longer or who have symptoms that are a little worse, the people that I meet through social media….those are the connections that inspire me to keep going.
You can follow Ardra on Instagram @ms_trippingonair. To learn more about MS, read our article Multiple Sclerosis: What You Need to Know About Canada’s Disease.