As we approach Thanksgiving, many of us pause to reflect on why we are thankful.
Without a doubt, the challenges with Lyme remain—better diagnostics and improved treatments are still sorely needed. But there are some things we and others in the Lyme community can be grateful for this year:
More Celebrities Speak Out
Supermodel Bella Hadid and President-elect Trump’s former wife, actress Marla Maples, were honored by GLA in 2016. They joined a growing list of celebrities who are turning the spotlight on Lyme disease, including singer Avril Lavigne; TV personality Yolanda Hadid; basketball superstar Elena Delle Donne; TV producer and author Ally Hilfiger; Daryl Hall; Marisol Thomas, wife of Matchbox Twenty frontman Rob Thomas, among others.
New State Laws Help Lyme Sufferers
Maryland’s first ever Lyme disease law requires healthcare providers and medical laboratories that draw blood for a Lyme test to give patients a written statement explaining the potential for inaccurate test results. In Massachusetts, health insurers must now cover long-term Lyme antibiotic treatment prescribed by a licensed physician.
Increased Research Interest
GLA received a record number of 31 grant requests for 2016-2017 research funding, an 80 percent increase over the previous year. This year’s applications are from researchers at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom. While their areas of research are diverse, it’s clear that the tick-borne disease community is zeroing in on unraveling the complexity of Lyme disease.
IDSA Guidelines Removed from Federal Database
Outdated Infectious Diseases of America (IDSA) guidelines were removed early this year from the National Guidelines Clearinghouse (NGC), a federal database used as a reference for physicians and healthcare practitioners in treating Lyme patients. The guidelines, currently undergoing revision, have for years restricted antibiotic treatment of Lyme patients to between two and four weeks. At present, only the guidelines from the International Lyme and Associated Diseases Society (ILADS) are on the NGC.
Increased Media Coverage of Lyme
FOX5 News aired two specials watched by tens of thousands called “Lyme & Reason: The Cause and Consequence of Lyme Disease” and “Lyme & Reason 2:0: Lyme Disease & The Voices of Change.” In addition, Lyme disease stories aired on WNET/MetroFocus, WBUR/PBS, CBS and local outlets as well as in national publications such as Huffington Post, Science, Town & Country, and others.
Most of All
… we are grateful for the unwavering support of Global Lyme Alliance’s volunteers, donors, and friends. Please help us accelerate progress in the fight against Lyme and join us in our Quest for the Test, GLA’s global effort to raise funds for a critically needed Lyme diagnostic test.
Wishing you and your loved ones a Happy Thanksgiving.
The importance of finding gratitude when you suffer from a chronic illness like Lyme disease
The upcoming holiday has us all thinking about being thankful. Thanksgiving is a time for feasting and gathering, but it is also a time for reflection on the things we’re grateful for. Depending on what’s going on in our personal lives and in the world, some years it’s easy to come up with a long gratitude list, and other times the list is sadly lean. Even during a time of purported joy, it can be easy to grow cynical and depressed when you don’t feel like you have much to be thankful for.
Lyme patients, people with chronic debilitating illnesses, and anyone going through adversity often fall into that trap. It’s hard to sum up gratitude when you’ve been sick for days, months, or even years. It’s hard to be thankful when it feels like the universe is conspiring against you, when things keep going from bad to worse, when it seems like your world or the world at large is falling apart.
It’s hard, but it’s important to find gratitude. In fact, it can be game changing.
Research proves that practicing gratitude not only improves health and outlook, it actually rewires our brains. Following a study done by Indiana University researchers, New York Magazine reported that “…the more practice you give your brain at feeling and expressing gratitude, the more it adapts to this mind-set—you could even think of your brain as having a sort of gratitude ‘muscle’ that can be exercised and strengthened.”
How do you go about flexing that muscle when you’re bedridden, or you can’t see past your despair? My own gratitude muscle almost succumbed to entropy. I stopped that from happening by starting a simple practice: each night before bed, I pulled out a journal and wrote down three good things that had happened that day. It was something I used to do orally with my campers when I was a summer camp counselor. Each night at Taps, we’d go around the cabin and everyone would say three things they liked about the day. The activity helped us reflect on busy days that were fun but also had their hardships; it set a positive tone in the cabin; and it helped the campers drift off to sleep with warm thoughts on their mind. I figured I could use that same positivity during my dark life of illness.
At first I had a hard time coming up with even one good thing about a day filled with pain and fatigue. But I realized I could find good even in those symptoms. Maybe my pain had only been a 9 that day, when for the last three days it had been a 10. That was a good thing. Maybe I had been able to sit up for 30 minutes, when previously I hadn’t been able to get up at all. Once I started reframing my perspective on all the awful feelings I was experiencing, it became easier to find their silver linings.
Soon, I was able to look past my symptoms when I reflected on the day. I realized other things had also happened during the day, besides a migraine and a fever and an exhausted afternoon when I could not nap. A friend had called. A get well card had come in the mail. I’d had a delicious gluten-free sandwich for lunch.
It didn’t matter that my list was simple. What mattered was that it existed. In just a few weeks, my gratitude journal started to fill up. On bad days I could flip through old entries and find something to smile about. I held a burgeoning, tangible reminder of good things that were happening amongst all the bad, and simply holding that growing booklet in my hand gave me strength. As my gratitude muscle grew stronger, so did I, and that would come as no surprise to the researchers at Indiana University. According to the New York Magazine article, the study results “suggest that even months after a simple, short gratitude writing task, people’s brains are still wired to feel extra thankful.”
It gets better. The article also states, “…gratitude can spiral. The more thankful we feel, the more likely we are to act pro-socially towards others, causing them to feel grateful and setting up a beautiful virtuous cascade.”
I see this cascade every year at my own Thanksgiving table. Before the meal, each member of our family says what they are thankful for. We’ve done this for as long as I can remember. One year, my sister suggested we add candles to the tradition. Now, as each person says what they’re grateful for, they light a small votive candle. They then use their candle to light the next person’s candle. That person says what they’re thankful for and then passes the flame to the next.
What strikes me about this exercise is that we can see how gratitude builds upon itself. Saying what we’re thankful for is nice, but the words disappear. With the candles, we have glowing reminders of our thanks. Each person’s flame is small, but together, we create a circle of light. It reminds me that there is more to be thankful for than I sometimes realize.
During my lowest points of illness, when I struggled to find something to be thankful for, this exercise also reminded me that I was surrounded by gratitude, even when I couldn’t feel it myself. There is gratitude and light around you, too. You may not feel it from the confines of your bed. You may not have the support you need from your own family or friends. But it is out there. By writing this piece, I pass my light on to you, in hopes that it will make your day a little brighter. When you’re better, you can pass that light on to someone else. Until then, remember that there are lights around you to buoy you up. Life is not as dark as it may seem.
And even from your bed, you have the ability to start controlling that light. To start flexing your gratitude muscle. Start tonight by writing down three good things about the day. What will the first one be?