As we’re in the middle of the holiday season, many people are swiping their credit cards for the perfect gifts for their loved ones. What about those of us in the rare disease community already struggling to pay for medications and other treatments to improve quality of life or sustain it?
This year has been a lot! It’s no secret that most have found it financially challenging. And those in the rare disease community have our own challenges when it comes to money.
One of my first columns was about the insurmountable costs of my medical care related to pulmonary hypertension (PH) and my coexisting conditions. I wish I was the “Million Dollar Baby” for the same reasons as the movie character performed by Hilary Swank. She was one tough boxer after being trained.
Many people with chronic illnesses aren’t in the best financial situation. However, we often lack the energy to shop for bargains. But it’s not only the money aspect; the added stress of shopping errands and events can also exacerbate symptoms. It’s essential to plan ahead and not allow shopping for gifts and extra errands to take control of us. Ask for help.
While families and friends gather to enjoy food and gifts, some patients spend the holidays in the hospital. These families are making decisions that others could never imagine. You can see how the added costs of gift-giving could easily jeopardize our health.
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February 18, 2022 News by Hawken Miller More Studies Confirm Hefty Economic Burden of Rare Diseases
Think minimalist
I come from a long line of gift-loving women who enjoy picking out gifts for others. I enjoy finding those items that remind me of the receiver each year. But this year, I, too, will be cutting back. I know my husband, Manny, will like this.
As much as I enjoy finding the perfect item for my loved ones, I know that time is something you can’t buy. Being kind and offering a helping hand to those in need are free, but they’ll make a lasting impression much longer than any more traditional gift could.
What about a DIY gift?
Handwritten cards are treasures. Some may say they’re a waste of paper, but they’re much more than that. Handwritten sentiments take time to write and are generous. Those who can’t handwrite them due to physical limitations may buy online cards like Postables, which can type and send the message to your loved one.
If you’re looking for a budget-friendly gift for people with a disability, think about what they could use for help on their most difficult days. Make gifts of homemade coupons for activities like cleaning, transporting the recipient to a medical appointment, and maybe even spending a night together with pj’s and movies. Grocery shopping would be another gift idea. I could use help with all of these daily tasks, but may be reluctant to ask.
Most of us would love to talk to our friends and loved ones. Simply spending time together is a gift. If you haven’t seen someone recently, the gift of a call would be even better and more personalized than a text message. A quick call to say hello will remind the receivers they’re on your mind this holiday season and year-round.
I’ve learned to enjoy the memories and help others when I can during the holidays. The past few years have been isolating and overwhelming. Let’s share kindness and offer a hand, an ear, or whatever else we can provide others that they may appreciate.
Create new memories that last a lifetime
I get it if you’re stressed out by the holidays while trying to manage a rare and chronic disease, as I am. Our spoons — our energy — dwindle fast during the holidays. I can never make it to every event I’ve planned. That’s why I’m grateful to savor each special moment. Life is too short to be anything but kind.
So I’m choosing to gift my time and kindness to others instead of spending money on things. Memorable moments with loved ones last longer, cost less, and create less stress.
I wish you and your loved ones a happy holiday season from my home to yours. May the new year bring an improved quality of life and many much-needed clinical trials that lead to new treatments and cures.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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