We Talk MS – Stories from our MS community
Chatting about your feelings, fears, and experiences is an important way to work through any major life event, especially after an MS diagnosis. Sometimes it can be difficult to find the right person to talk to about how you’re feeling or what you may be going through.
That’s why we created We Talk MS. We Talk MS is our new online connection space for people living with MS and their loved ones. It’s a safe space where you can feel free to talk about all things MS with people who have similar and different experiences. You can learn from others, listen to others, and gain valuable friendships and support 24/7.
Whether you want to chat about your future living with MS or are making peace with a loved one’s diagnosis, We Talk MS connects you with someone to talk to.
*Currently, this program is only available in English, but we’re working on making it available in French too.
Here are some stories from members of our MS community who’ve made valuable connections through We Talk MS:
Marielle
"In 2012, a numb toe led me to an unexpected MS diagnosis. As a mom, my first thought was how it would impact my role.
As I navigated the world with my new diagnosis, it felt like time stood still while the world fast forwarded at a pace I couldn't keep up with. Thankfully, with the support of my friends, family, and neurologist, I put in the effort to overcome the heartbreak that MS can present. I can happily say that I now view MS as a blessing in disguise.
Many obstacles I face revolve around my energy levels, cognitive concerns, and my inability to walk without an aid. When I was first diagnosed, my mental health was in the worst shape it had ever been, due to the anxiety and uncertainty I experienced. At first, I viewed myself as incompetent – someone who wasn’t able to keep up with my peers, wasn’t able to be a ‘good mother’, wasn’t able to check off life’s list of things you must do to be ‘successful.’ Thankfully, ‘success’ now has a new meaning for me. I’ve taken control of certain aspects of my life, established a sustainable routine, and use resources that have led me to more peace, happiness, and purpose.
The biggest lesson that living with MS has taught me, is that I have the ability to change my perspective about a situation without giving my disability the power to make it seem like it’s destroying my world. I always like to say that I’ve proudly turned my pity parties into dance parties, celebrating and giving gratitude to everything good, big, or small in my life.
In the beginning, I felt ashamed to live with a disabling disease and didn’t know how to properly talk about my symptoms, especially the invisible ones. I was afraid I would come off as an attention seeker or someone who doesn’t have it together. Now I like to talk about it any chance I get because hearing other people’s experiences inspires and motivates me to live a fulfilling life despite my MS. Hopefully my story will have an impact on someone I know or meet.
That’s why I decided to join We Talk MS. I was drawn to the platform because of the opportunity to meet so many people across the country with similar life experiences. I feel empowered by others living with MS, so being able to connect through We Talk MS allows me to continue to learn and grow as a person living with the disease, especially considering how unpredictable MS can be. Knowing there’s an online space specifically for MS warriors makes me feel safe sharing my own experiences without fear of judgement, because they know what it’s like and can validate that what I‘m going through is okay. When I speak with others who are struggling, it brings me back to my dark days. It’s so important for me to let them know it’s okay to have those feelings. If you’re newly diagnosed, remember to be your true, authentic self when you’re ready to share your story. It can be scary, but try to be brave and confident, because you’ll find that you’re not alone.
If you’re thinking about joining We Talk MS, do it! You’ll learn from others experiences, develop meaningful friendships in a safe and judgement-free environment, and get support when you need it.”
Karen
“In January of 2020, I was diagnosed with relapsing-remitting MS. Before my diagnosis, I spent years reasoning away my symptoms and experiencing what I now understand as ‘MS flare-ups.’ Regular visits to my doctor and standard blood tests left me with no answers. Alarmed by my physical decline, I insisted on requesting a brain MRI from my family doctor. I can still hear the doctor’s voice say to me, ‘You have brain lesions consistent with MS.’
Since being diagnosed, I’ve become known as the woman who’s ‘addicted to HOPE’ and I share my message wherever I go and whenever I make connections.
MS can be very isolating and lonely. We Talk MS reminds us we’re not alone. It’s an online community that provides a safe environment to connect with other people affected by MS that are experiencing a similar journey.
I love connecting with people on We Talk MS. I enjoy developing deep and meaningful relationships with others. I always aim to inspire and make a difference. The most important thing to me is that it’s done authentically, in the moment, and without fear of judgement. I feel guided to help others and share kindness wherever I can.
We Talk MS has helped me in my journey with family planning. Being able to talk to others about the possibility of motherhood while living with MS is such a relief. I enjoy the new friendships I’ve made with my ‘MS buddies’ and the encouragement we can provide to one another.
This online platform has helped me regain my confidence and stay connected with others experiencing similar ups and downs while living with this disease.
Life’s about forming meaningful connections and our growth through the experience of those relationships. I believe that other people affected by MS should join We Talk MS because being heard by a community who understands is so important.
I’ve realized that the disease manifests differently in everyone. There are different progressions and different attitudes, but we all share the same disease. I’m still a work in progress, but I know joining We Talk MS was the right decision for my long-term health and happiness. You should check it out too.
Until a cure is found, we can manage MS together by sharing our own best practices.”
Amanda
"I was 26 and working as a registered nurse when I was diagnosed with MS, and was hospitalized down the hall from the unit I worked in. My coworkers were regular visitors, so everyone knew about my diagnosis as soon as I knew. Looking back, that experience didn’t allow me to fully process what it meant for me and my life.
At first, I didn’t find it hard to talk to people about my MS, as I was very open about my diagnosis. Being a nurse, I spoke about MS clinically and detached it from myself. But, as my MS started to impact my day-to-day and slowly took away my career and my ability to plan for my family, as I once did, it became extremely hard to talk about.
I started to receive unsolicited advice from every corner of my life, and I found myself talking about my MS less and less. I don’t enjoy receiving the ‘how are you?’ that really means ‘how is your MS?’ from others.
I find it overwhelming to constantly explain the good but chronic bad state I’m in. I have good days but there are still obstacles. It gets exhausting talking about what’s happening to my body when I’m confused by it myself.
Talking about my MS with others is not something I’ve completely overcome, but I’m working on different strategies to make it easier. I send a health update to family members or friends before seeing them and let them know I don’t want to talk about it more than that. Learning boundaries for myself and others will be a forever process of talking about this forever disease.
I just added a new strategy to my list by joining We Talk MS, MS Canada’s new online chat platform. We Talk MS is a way to connect with others living with MS (and family members, partners, caregivers, and friends of people with MS). Being part of the MS community through this platform has given me a sense of purpose and is a way to give back.
We Talk MS is helping me along my journey by making my world feel less small and giving me an outlet to meet others affected by MS. It’s such a great platform to share lived experience information about medication and other wellness hacks.
We Talk MS connects people within all walks of life, but with a shared characteristic – they’re all affected by MS. I hope We Talk MS will continue to provide a safe space for people affected by MS to connect and share how they’re feeling.
Sometimes the biggest challenge in someone's MS journey is connecting. It’s so important to show solidarity and comradery within the MS community. I believe that We Talk MS can help others fight against isolation as it has helped me feel less alone.”
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