Reflecting on the Pandemic as a Rare Disease Patient

February 22, 2022

February is Rare Disease month and as we approach our second Rare Disease Day of the pandemic, I wanted to share my thoughts on what the last 2 years have been like for me, someone who lives with a rare disease.

As a rare disease patient, the last two years have been a roller coaster. Living through a global pandemic that is evolving in real time, while juggling the continuous health challenges that don’t stop impacting my life during Covid has been challenging. It is scary to be medically vulnerable while there is a contagious virus impacting the public. Not knowing how it would impact me, should I contract it, has been stressful. My family and I have changed our daily routines and we’ve had to weigh the risks and benefits when deciding how to manage this time as a family.

Accessing care as a rare disease patient can be a challenge during normal times, let alone during a pandemic when the healthcare system is overwhelmed. It has been difficult to transition to virtual care with some of my specialists because so much of my condition needs to be assessed in person. Having my Rheumatologist guide me through doing my own physical exam on specific joints over the phone and then report back to him what I was feeling did not feel like an adequate exam by which to make treatment decisions based on, but that has been the reality. There are multiple specialists that I have not been able to see in person since the pandemic started. Add onto that cancelled procedures, delayed tests and no doubt, like many other rare disease patients, I am sure my conditions have progressed as a result of not being able to access my providers in a timely manner.

Setting Priorities

Living with a rare disease has taught me to always weigh the consequences of my decisions – in both my personal and my professional lives. Prior to Covid, if I was traveling for work, I would inevitably end up with a cold when I got home. If I wanted to spend the day at the amusement park with my kids, I would have to spend the following day resting because of the pain and fatigue.

Life during the pandemic has been very similar. Was it worth it for me to go out to dinner in a restaurant when that could lead to an exposure? We had to decide as a family what our priorities were – for us, keeping our kids in school in person was a top priority. This has led to me reducing additional exposures for myself in places like the grocery store, mall or social activities.

My life has gotten very small and insulated over the past two years. I work from home, I don’t really go out other than to exercise outside (I try to walk every day) and my social life has consisted of porch visits with friends. I miss going into an office, seeing people face to face, hugging my friends and family. All those daily interactions that I once took for granted have been eliminated.

The Silver Linings

Of course, not everything has been negative. Our family has definitely grown closer (at times there has been a little too much family time!). Slowing down, getting off the hamster wheel that we were on pre-pandemic of working in an office, business travel, three kids in rep sports, active social lives for all of us…we were running from place to place all of the time. Slowing down has really shown us the value and necessity of being intentional about how we spend our time. We say no more now, which is not necessarily a bad thing. Since we’ve been missing extended family gatherings, we now make a concerted effort to see our siblings and parents more often. We value our Sunday dinners, and they are non-negotiable now. I am also very grateful to be able to watch my kids participate in their sporting activities now. Pre-pandemic running the kids to hockey, flag football, and so on felt like a job. Now I am present and enjoy sitting in the arena, watching the joy they get from playing.

As a society, it has been heartwarming to see the community pull together to get vaccinated, to support our healthcare workers, to keep the medically vulnerable and elderly population safe. I feel like in some ways, this pandemic has really shone a light on the value and importance of the Canadian healthcare system. We see where the foundational cracks are and now is the time to make things better.

So Many Changes

The hardest change for me was the shift to working from home. For the past 25 years I have worked outside of my home. I love collaboration and connection with my colleagues. Face to face conversation is very important to me. I feel like the human connection is lost over email and text and while video conferences have made it easier to see the humans on the other end of the screen, I still feel like the human connection is lacking sometimes. That being said, I have definitely settled into a routine that now I am not sure I want to give up.

I now have more flexibility with my time and with my family because I can schedule my meetings around when they arrive home from school or have an appointment. I will admit that not having the separation of office and home has meant longer work hours for me. Where I used to have to physically leave to pick up my kids or get home for dinner, it is now way too easy to start my day earlier and work later. I have set some clear boundaries this year that I am working towards, one of which is unplugging when my workday is done.

I do miss my colleagues and the water cooler banter though. Those moments just are not the same via Teams.

Virtual Care just isn’t the same

I am a huge supporter of virtual care and absolutely see the benefits to having the adoption from the healthcare providers that we have had over the past two years. But some appointments need to be face to face and I feel strongly that the choice should be given to the patient as to what method works best for them.

Out of my 11 specialists, I have only been able to see 3 in person over the past two years. I know that I am not unique in this experience, and I firmly believe in some cases this has impacted the level of care I have received. A telephone appointment is simply not the best experience for most complex patients for anything other than a prescription renewal or lab test request. Again, we are, in some cases, missing the “human” element in healthcare by moving strictly to virtual, and it can leave patients and caregivers feeling very much like they are in a transaction.

Based on the strain on the Canadian healthcare system, access to “non-essential” surgeries and procedures has been impacted significantly. This has had a detrimental impact on my health. I have been waiting on a surgical repair for 18 months now and my quality of life is diminishing with every passing month. I am grateful that I can still function but during times of significant discomfort or flares, it can feel hopeless when we hear things like a backlog of 500,000 procedures in Canada.

Rare Disease Patients Matter

Covid has been at the forefront of everyone’s minds, and rightly so, but there are still 3 million Canadians who are living with a rare disease. Globally, there are 300 million people living with a rare disease. Many of those patients have no treatments and/or cures. I always say, individually we might be rare but collectively we are strong. We need to remain focused on Canada’s adoption of a rare disease strategy and on clinical trials and research opportunities. We must also continue to share knowledge within the rare disease community. We learn so much from our lived experiences.