Perspectives of The Pompe World

It is a vulnerable thing to know that as a medically complex person, or parent of one, our healthcare providers are our lifeline. We lay our hearts in their hands and humbly ask them to help us. Many aspects of life depends on their knowledge and judgement, so finding one who we trust is irrefutably critical. 

As a healthcare provider myself for over a decade, I’ve always taken that trust seriously and keep it at the forefront of my mind as I make judgements about caring for another’s health. I am not naive to think that all providers do the same but in my true experience, most do. I started the first four years of my daughter’s medical journey knowing I was in good hands and I cannot tell you how that helped my mental state early on. Our providers cried with me, called with results after hours, cradled my baby, and took ample time to assure us and answer questions. I had heard horror stories of other families like mine who did not have this experience and I remembering feeling so glad it wasn’t us. Until one day it was. 

Unfortunately, our beloved provider moved and we were required to transfer care to another. While I was nervous, I was optimistic and open minded. Our very first appointment absolutely shattered my warm and fuzzy trust that I had relied on for so long. This provider tried to change everything. This provider gave opinions that contradict evidence, was dismissive, accusatory, made light of my fears, and turned semisolid ground into quicksand. My trust and sense of security was in ruins after only one appointment and we felt truly lost. 

The other side was such a lonely place to be. I fought until we were transferred again and feel we have been much better matched. But I can’t deny the way that experience changed me and my confidence in our care plan. I share this with hopes to empower others to advocate for your own best interests. 

If you don’t have trust in your provider and their knowledge, go elsewhere. Search until you land with someone who is knowledgeable, trustworthy, and doesn’t dismiss your concerns and never look back. Getting this diagnosis and living with it is hard enough without having lost your trust in your plan of care too. There are people out there who know enough to fight for your best outcomes, and if they don’t know enough, they will humbly seek advice from those who do. Healthcare means everything to the quality of life for people with progressive disease and having a provider who you have confidence in, is what everyone deserves. 

To the people who find themselves connecting to how my experience made me feel, I hope you have since found better. I hope you know that demanding more for yourself or your child is your right, and we should never settle for providers who don’t want the best for you, or don’t have the time /knowledge to provide it. You have to live with this, not them. And they are not all like that—the majority care and want to plan for your future the way they would their own loved ones. Don’t let the bad ones steal your faith in the system completely, and demand better. By demanding more, we show them it will not be tolerated and help those who come later by preventing them from having experiences like ours. There are good ones out there, I hope you each have faith that yours is one of them.