Multiple sclerosis (MS) is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). MS is unpredictable and can cause symptoms such as extreme fatigue, bladder problems, cognitive impairment, and mood changes. Its effects can be physical, emotional, and financial. Canada has one of the highest rates of MS in the world, with an estimated 1 in every 385 Canadians living with the disease. Currently there is no cure, but each day researchers are learning more about what causes MS and are zeroing in on ways to prevent it.
Erin’s first thought as she sat in her neurologist’s office after being diagnosed with multiple sclerosis was, “Will I be able to have children?“ Immediately followed by thoughts of how her family would manage the diagnosis.
Erin has had to learn to make herself a priority since being diagnosed nearly three years ago. “During the first year of my diagnosis I had to be a little selfish in terms of taking what I need. I made my Mom promise me she wouldn’t tell her family about my MS diagnosis right before a relative’s pre-wedding festivities because I wasn’t ready for them to know and didn’t want to take away from his event. I take naps when I’m tired, and I created a #JustinCaseICant list of items I’d like to accomplish while I’m able, and I’m really focused on achieving as many things on that list as possible. I’m still there for my family and my friends, but I do a little more for me now.”
“I was always the person who needed to sleep a little bit more. Now, I just tell people that I’m going to have a nap. And I nap for 20 mins and I feel like a brand new person. My mom reminded me to stop telling people I’m tired and start saying I’m experiencing fatigue. Knowing what I have makes it feel like I have permission to do things to take care of myself.”
Erin’s small acts of self-care are what allow her to be the present and reliable colleague, daughter, and friend. By asserting her own needs and boundaries, she also gives her loved ones the opportunity to support her in a way that actually helps.
“For me, letting my friends and colleagues know what is happening, and that I initially didn’t feel like answering any questions about it, has allowed them to be there for me in a way that works.”
By keeping those close to you informed about what you need, you allow them to support you in the best way for you and that feels good for everyone involved. It takes away the guess work and gives people who want to be there for you the chance to do so in a meaningful way. By establishing such a strong support network right from the start, you also avoid feelings of isolation and alienation.
Less than two hours after her diagnosis, as she sat in the waiting room crying with her mom, Erin ran into a former colleague who was there with her son.
“Right away I was embarrassed, thinking my coworkers would think differently about me. And then I ran into my former colleague and her beautiful baby. I thought it was the worst thing that could have happened when I initially saw her, but then she and her son sat down right beside my mom and I, it turned out to be the best thing, because it gave us something to take our minds off what was happening. It was a tiny dose of normal in the least normal day of my life.”
The Friday before her diagnosis, a good friend invited Erin over for a lobster dinner – Erin’s favourite food.
“We knew I was likely about to get some difficult news, and I thought I was going to stay at home and cry. But my friend Tara cooked me a lobster dinner, and we didn’t talk about the potential diagnosis at all, and that was the best possible thing she could’ve done for me. I didn’t think about it once that night.”
Finding these small moments of normalcy, where MS isn’t at the forefront of her mind, has allowed Erin to cope with her diagnosis. Shortly thereafter, Erin went on a work trip to the Arctic that had been in the works for some time.
“All I wanted to do was curl into a ball, but I knew I’d likely never get the opportunity to go to the Arctic again. At the beginning of my trip I told the people I was travelling with about my situation, and they were all so supportive. I actually think that that trip was kind of a kick in the pants. Like, ok, you got some bad news, and now you have to take care of yourself. For me, keeping things going is what worked.”
Being told you have an incurable disease is a terrifying experience no matter how you slice it. Multiple sclerosis is inherently unpredictable, it can turn your life on a dime. That level of uncertainty can take a toll on one’s mental health. Like with any major life shake-up, people handle it in different ways. Erin Truax saw it as a wakeup call. She started writing a list of things she wants to do in case she wakes up tomorrow and can’t anymore. What started out as her #JustinCaseICant list has since grown into her #BecauseICan list, which empowers her to keep doing things that she might otherwise put off.
Here are a few items I have completed as part of my #JustInCaseICant / #BecauseICan list since I was diagnosed.
-Took ski lessons
-Took intro to tennis lessons (and loved it)
– With my team of more than 20 “Truax Trekkers”, I have participated in two Mandarin MS Walks
-Took a trip with my youngest cousin, 23 years my junior
-Started Pilates and Personal Training
Still on my list:
To drive a race car
…I welcome other ideas, but skydiving is out of the question.
Being diagnosed with MS taught me not to take any opportunity for granted. I am appreciative of even the smallest things and celebrate each achievement.
When positivity feels impossible
“I have bad days. I never want to put on airs that I felt completely positive in the first five or even 10 months. Being sad won’t cure me though, and I keep that in the back of my mind. I think that listening to who you are and what you want to do is important.
Making sure people know what MS is and how it affects people differently became really important to me. I needed people to care about this disease so I could feel hopeful for the future. So I decided to do something about it. I started advocating and fundraising. You have to decide what you’re going to do with your situation. What is going to make you feel proactive and positive about your life. It only takes one person coming up to you after a speech telling you that you’ve inspired them to tell their own story to make it all feel worth it.”
On her worst days, Erin’s go-to acts of self-care arerelaxation, short naps, and spending time with her dog.
Erin’s advice to anyone whose loved one has recently been diagnosed with MS is:
- Listen carefully to what they need.
- Ask questions about how best to support that person.
- Respect their boundaries and wishes.
- Don’t be afraid to do something positive for them.
- Remember that they are still the same person they were before their diagnosis.
Through its SHOPPERS LOVE. YOU. initiative, Shoppers Drug Mart is committed to positively impact women’s health and MS, helping the MS Society update and create new resources, and raise awareness of topics related to women’s health. Visit mssociety.ca/managing-ms/womens-health to access new resources and materials.