Isolation and Hope: My Raynaud’s Journey
by Natalie Dicou
Raynaud’s is one of those “invisible” disabilities that makes a person feel like no one understands.
“Invisible?” you might be thinking. "What about the flamboyantly colored fingers that change hues as flashily as a chameleon?"
Yes, Raynaud’s is viewable with the naked eye, but for every time someone notices a Raynaud’s sufferer’s white, blue, or purple fingers, countless other difficulties go unnoticed, such as the psychological and physical tolls of constantly worrying about keeping your hands warm, reheating them after they’ve gotten cold, etc. It’s exhausting, unrelenting, and isolating.
I’ve never known anyone in real life who has Raynaud’s as badly as I do.
I need a room to be at least 72 degrees fahrenheit or 22 degrees celsius or my blood will stubbornly refuse to travel to the farthest reaches of my body. Within minutes, the top inch of my fingers will turn white. My pointers are the first to go, then my ring fingers, then the rest. The longer I stay in the “cold” place (read: just not warm), the farther down my fingers the whiteness will spread.
It’s almost impossible to comprehend what it’s like if you don’t have Raynaud’s or a spouse or partner with Raynaud’s. Even partners and best friends have the luxury of not thinking about it all the time. Severe Raynaud’s can be so very lonely.
And yet here I am suddenly hearing from people with Raynaud’s from all over the world thanks to Toasty Touch, which my wife Nico and I officially launched 3 months ago, in February 2022, after searching in vain for super-thin, heated gloves. Nothing like the gloves I envisioned were on the market so we decided to take things into our own hands, and Toasty Touch was born.
Now frosty-fingered folks from everywhere (special shoutout to our friends in New Zealand and Australia who are headed into winter!) are leaving us reviews, sending emails and DMs, and reaching out to say our gloves are exactly what they’ve been searching for.
Recently, I was out in my garden and Nico came outside and said “Listen to this new review.” She started reading.
“I am so grateful! I found these amazing gloves via a Facebook Raynaud’s group and I am sooooo impressed. I love them. So far I have had no flare-ups of my Raynaud’s and usually I can have 20 plus a day. It’s the afternoon and I have not had 1. I've had scleroderma and Raynaud’s for the past 10 years battling hard, and these gloves have given me another lease on life. I can still write, use my phone, etc., etc. I cannot express how much these gloves have changed my life, and it’s only been 1 day. I am soooo happy I bought 2 pairs since I’m in NZ. Thanks so much for designing these. They are literally life-savers for me.”
I fell to my knees, overcome with emotions. I just shook my head as tears came to my eyes. It broke my heart to think of Kelly’s struggle, and yet I felt immense happiness, pride, and confidence that we are on the right track with this Toasty Touch thing. Here was perhaps the most compelling evidence to date that this business, this dream we’ve been working so hard on, is making a real impact on real humans who have real lives and real feelings and who live on this same globe.
It was utterly humbling.
Kelly's words also made me feel less alone, less like a weirdo with a defective body who is constantly asking if she can turn up the heat when everyone else thinks the temperature is just fine.
For so many reasons, I can’t wait to find more Kellies out there.