The Arthritis NewsletterSummer 2021
Living Well with Arthritis
Sandra Sova was diagnosed with juvenile rheumatoid arthritis at the age of eight. Today, she also lives with osteoarthritis.
Arthritis has shaped many aspects of her life and has driven her to inspire others to thrive with different types of this disease.
As a radio and podcast host and producer, moderator and family caregiver, Sandra strives to create awareness about arthritis and the importance of arthritis research.
Can you share the story of how you were diagnosed?
It started with my left knee. I was having difficulty climbing out of my bunk bed. It was really painful. At first, my doctor didn’t know what was going on and I remember using crutches to walk to and from school. I was taken out of physical education class and sent to special needs swim therapy at a community centre. I remember feeling scared. Eventually, I received an arthritis diagnosis and started attending a physiotherapy program at the Mary Pack Arthritis Centre. This was amazing because being around other people who had my condition helped me feel supported. It normalized the experience and was the first step in my self-education process.
How has your arthritis impacted your life?
It’s something I live with every day. I have learned to find ways to live well and thrive with arthritis. Having this disease taught me to be a well-informed advocate for my care and prepared me to navigate a breast cancer diagnosis, treatment decisions and recovery. I used to believe that people with arthritis couldn’t be physically active, so I lived a sedentary lifestyle for a long time. Now, I have embraced the importance of an active lifestyle and the value of self-care.
How has your arthritis shaped what you do for a living?
In the beginning, arthritis was a constant companion at work. I was in denial and did everything I could to hide my pain and condition. Then, in my 40s, my disease activity was extremely high and I was forced to make a difficult decision: to step back from the corporate world and focus on my health and wellbeing. It felt like failure. To this day, my life is a balancing act of managing daily activities, adequate rest and recovery and effectively managing my response to stress in non-pharmaceutical ways. If I don’t effectively manage stress, I go into a flare, which can be hard to control. My work is now my self-management of this condition, being fully present and living well with arthritis.
In a way, arthritis has allowed me to reinvent my life. I not only advocate for my own health and wellbeing, but I also share my story and experiences to inspire others to see that it is possible to live well with this disease. I started hosting and producing the Chronic Wellness Radio Show, at our local community radio station every second Wednesday. That show has evolved into the Chronically Driven Radio Show and Podcast. My guests and I talk about what it means to be in the driver’s seat of our health, mind, body and soul. It has become a way for me to be accountable to myself and I’m constantly learning.
I have also collaborated with Arthritis Research Canada by moderating and hosting Arthritis Wellness Conversations. These came about when the COVID-19 pandemic hit as a way to provide a sense of connection and community for individuals living with arthritis. Each month, a research scientist and people living with different types of arthritis come together to have a conversation about a topic related to living well with arthritis. These are designed to be conversational in nature rather than presenting data. It is always my hope that someone who is newly diagnosed will find value in hearing from people just like themselves, living with arthritis.
Why is it important for you to help create awareness about arthritis?
Have you ever heard the phrase, ‘write about what you know’? I know firsthand the debilitating effects of this disease. It can take a physical toll and also impact mental health, relationships, employment and more. Awareness is key to driving continued life-changing research. I share my experiences to help others just like me.
Why do you think arthritis research is important?
I have lived with this condition for most of my life. I understand the impact it can have on quality of life and I recognize that arthritis research is needed. Personally, I am excited and encouraged by research in the area of lifestyle, self-management and mental health. I feel that living well with a chronic condition like arthritis requires not only effective management of disease activity, but also participation by the individual to pursue a healthy and active lifestyle. I feel strongly that programs, apps, and education that can help engage and empower patients to take an active role in their overall wellness, are so important and I’m excited to see what’s next.
What would you tell someone struggling to make the decision to take medical leave?
Wow, that is such an important question and it’s an emotional one for me. Everyone is different, so I don’t really have advice but I will say this…I recognize NOW that my priorities were out of alignment when I was making the decision to leave my job. My body was literally screaming at me. I wasn’t sleeping, I had no capacity for anything other than getting myself to and from work and I was getting sicker by the day. I did not make myself a priority. Looking back, seeing how I pushed myself so hard and neglected my own health makes me tear up because it feels so very wrong and is not at all in alignment with how I choose to live now.
What do you want people to know about living well with Arthritis?
When it comes to living well with arthritis, medication is only one piece of the puzzle. An important piece for sure, but not the only piece. As individuals, our daily choices play a big role. I love how in the Arthritis Wellness Conversations we have been able to talk about lifestyle factors like exercise, maintaining a healthy weight, mental health support and being active in self-management of this condition – all have significant impacts on quality of life.
What do you wish people would understand about this disease?
That it is not a one-size-fits-all experience and it can change from one day to the next. I think this is an important point for both people living with arthritis and the general public to understand. Arthritis can make it hard to plan ahead. One of the more challenging aspects for me has been the recovery time needed after just living life and how doing too much can result in setbacks. It is a constant balancing act.
Host/Producer – Chronically Driven Radio Show & Podcast
Moderator – Arthritis Wellness Conversations
Family Caregiver – Patient & Wellness Advocate
“You don’t have to be Chronically Ill to want to be Chronically Well”
Click here to learn more about the Chronically Driven Radio Show & Podcast.