September 14, 2020
The Journey and The Gift
Being diagnosed with a rare disease was the very last thing that I thought would happen to me. And having the diagnosis journey take 7 years…was unexpected. But in 2013 I started on a road that would be full of bumps, potholes the size of a valley, and a gift that I never could have imagined. This would become the single biggest thing that changed my life and the way I think about my healthcare, caregivers and advocacy.
You don’t know me, but for years before my diagnosis, I defined myself as a daughter, wife, mother and entrepreneur. After working at warp speed for corporations and as an entrepreneur for years, I had to take a pause…a giant (for me) 2 year pause to get my health back on track.
I was suddenly defined as a patient.
There was an immense lack of control over my own destiny and a journey to rare disease diagnosis, with a mountain of appointments, and a set of challenges in managing my healthcare. Add to the mix time on my hands…and it left this Type A personality with an unexpected amount of time to pick apart my situation and really dig into the big issues.
I started asking questions. To everyone. Friends. Family. Strangers. Anyone who could tell me about what they did to manage complex medical conditions. Because the giant binder that I was carrying around was big and heavy. And then there was that one time that I left it at home by accident, the specialist in Toronto didn’t have the lab reports from an MRI I had done in Hamilton, and the appointment ended 2 minutes after it began and set me back months. This clearly wasn’t working.
There had to be a better way.
So I looked for apps. Because this isn’t 1980…it’s 2016. There should have been something. And there wasn’t. So I did what any good entrepreneur would do. I built it.
I’m not going to pretend that this was easy. When I write it in a blog-post, it reads like “Building a Healthcare App in 5 easy steps.” It was hard work and a massive financial risk. One that I would take again in a heartbeat, because this is what it taught me.
- I am all the things I defined myself as before. And I’m more. I’m an app builder. I’m an advocate. I’m a community builder.
- I will speak for people who can’t find a voice every day of the week. And with this, I have raised the voices of people who care for those with chronic diseases, rare disease patients and other chronic disease patients. We may have an invisible disease, but we are not invisible.
- If you don’t see it, build it. And build it with the end-user in mind because you can make the fancy thing, but if it doesn’t meet the need…fancy doesn’t matter.
- Listen to the feedback. Be humble. Leave your ego at the door.
- It’s going to be hard. People won’t have faith. People will lose faith in what you’re doing. However, if you know it is right, keep at it and keep moving forward. Failure is a given when you are embarking on something new. I don’t view any of my mis-steps as failures because of the learning opportunities they provided.
Living with a chronic rare disease isn’t easy. I make tough choices every day about my healthcare and the life I want to lead. But the role I play as advocate for my community, the voice that I have grown into, and the impact that Chronically Simple makes on the life of patients and caregivers…that is the gift that my diagnosis and my journey gave me. That is what I can be proud of, and what I want my kids to be proud of.
Taking something challenging, and making it into a dream that has purpose…well it doesn’t get any better than that.