It’s Valentine’s Day, and we could all use a bit more love in this world. While I can’t send you a box of chocolates or a rose bouquet, Dear Reader, if I had my own little candy conversation hearts to share, here is the one message I’d print on them:
Easier said than done, certainly. But it’s a phrase that I’ve been thinking about a lot, especially since the pandemic. I use it to sign most of my email correspondence these days, business and personal.
Being well is more than just a physical state. We don’t necessarily have control over what our bodies do, especially with a disease as complicated as scleroderma and all its associated ailments. Assuming access to good medical care, however (and that’s a big assumption, given health care consolidation and the health insurance mess in the U.S.), it is possible to get treatments and medical support to ease the disease process. It requires recognizing and understanding your personal situation, learning what help is available and whom to trust, being a strong self-advocate, and following through on treatments and protocols.
There is a lot to learn about scleroderma, and a lot to process. My resources page links to leaders in scleroderma research and education, to help you. But the self-advocacy piece is, for me, the most important aspect of dealing with this disease for the past 40 years. I’ve learned to push my doctors for information and explanations, and to share my fears, as well. I’ve also learned to challenge treatment recommendations that don’t make sense, and how to find research that I’ve shared with my medical team to move in a more logical direction. And I make sure that I get all my questions answered in every appointment, regardless of how long it takes. I’m grateful that my medical team respects me for it, as much as I respect them.
In this sense, to BE WELL means that you are not your diagnosis. You are a complex individual with a complicated disease that requires you to stand up for yourself and what you need to remain as healthy, active, and involved in life as you are able. Wellness is as much a state of mind as a physical state. If there is one message that I hope this blog conveys to anyone with scleroderma, newly diagnosed or a veteran like me, it’s about living, not the diagnostic label.
So, happy Valentine’s Day to all. Be well.
Image: Laura Briedis
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