Cassie Creley

@cassiecreley | contributor
Hello, I live in the beautiful Pacific Northwest and storytelling is my passion. I live with multiple chronic health conditions including POTS (a form of dysautonomia), fibromyalgia, ME/CFS, asthma, allergies, and autoimmune disease. I had a thyroidectomy due to thyroid cancer at age 29. I blog about my creative pursuits, faith, and finding joy during chronic illness at cassiecreley.com. I love books (especially fantasy), the ocean, and chocolate. I’m a poet and also hope to have stories and books published someday. My goal is to shine a light on invisible illness and encourage others. You can find out more about my Invisible Illness, Visible Worth interview project on my blog. I’m also on Facebook and Pinterest and would love to connect with you!
Cassie Creley

Celebrating Months vs. Days: Holidays With Chronic Illness

Flexibility around the holidays is something I learned growing up, and it’s a helpful practice when it comes to celebrating holidays with chronic illness. I’m sharing ideas for celebrating throughout the month so you don’t feel pressured to fit in everything on the day of an actual holiday. When I was growing up, my dad was a 911 dispatcher, so he frequently had to work on holidays. For us, the important thing was celebrating together versus focusing on a specific day. So how can we celebrate a holiday month? It doesn’t mean feeling pressured to do something every day or making the month super busy. It means incorporating little bits of holiday spirit throughout the month. Spread out the days you do something festive as little or as much as you want, adjusting as your energy allows. I have POTS, fibromyalgia, ME/CFS and other conditions that leave me exhausted, and these tips are helping me conserve energy while still enjoying seasonal festivities. Halloween Here’s an example of what I did for Halloween this year. I set myself a challenge of wearing outfits inspired by autumn themes (for instance one outfit was inspired by my black cat accessories) or movie characters (like Disneybounding). I wore my actual Halloween costume for an early virtual party. My goal was to wear five to 10 outfits and I made it to eight! It was so fun dressing up in a smaller way all month, not just October 31. Good thing I did because I spent most of Halloween in PJs. My fibromyalgia was flared and every movement felt like it was tearing my muscles. My Raynaud’s also flared, so my fingers felt like they were frostbitten. I managed to shower despite seeing stars for a while after standing, then I changed into a cozy all-black outfit to feel festive. I would have been too uncomfortable and tired to wear a costume. But I didn’t feel like I had missed out on Halloween. I didn’t feel pressured by my own expectations or stressed by fear of missing out. I was able to chill and let the day be what it was. I’d gotten in my dose of Halloween fun. Thanksgiving Here are some ideas for November. My mom will often cook a turkey earlier in November, which has been a special treat. This has worked especially well since I seem to have a big appointment each “Thanksgiving Eve” the last several years. The long drive and appointment both left me pretty wiped out on Thanksgiving. Maybe celebrating Thanksgiving all month looks like having a thankfulness jar for November, or enjoying one special recipe a week vs. feeling the need to cook everything on one day. I’m hoping to get together once or twice with friends over video calls for virtual game nights. I shared ideas for virtual get-togethers recently in my blog post How to Stay Connected From a Distance Holiday Edition. I also start pacing myself and making some Christmas gifts in November. Christmas I’m glad the advent season already has so many traditions that focus on the month leading up to Christmas. I’m already looking forward to setting up my Harry Potter advent calendar I was gifted last year. A friend and I are also going to do this advent Bible reading plan together. You could also use the month of a holiday to raise awareness or funds for a cause. In the past, I’ve participated in Dressember by wearing a dress several days to raise awareness about human trafficking. The challenge is to participate every day, but it can be modified depending on your health. You could also start a new tradition by opening a couple of presents early in December. My family has done that so I’m not as worn out on Christmas Day. (It’s pretty bad when opening gifts flares your fatigue!) The plus side is you can start enjoying those games or puzzles, etc. throughout the month. Birthdays My family celebrates birthday months too. In years past, this has looked like two or three smaller gatherings vs. one big one. (It makes for more relaxing get-togethers where you get to visit with everyone). This can be played out in small fun ways too. For instance, if my family is picking between movies to watch and can’t decide which to watch first, the person whose birthday month it is gets to pick. I’d love to hear your ideas for celebrating holiday months vs. just the day! Have you done something similar? Do you plan to?

Cassie Creley

Lessons From COVID-19 About People Homebound With Chronic Illness

I think the thing all of us are most looking forward to after social distancing ends is seeing our family and friends in person again. I bet you will have a big smile on your face the moment you reconnect with those you love. Now imagine they saw you smiling and assumed that quarantine was easy for you and that you were not impacted by anything that happened. Meanwhile, maybe you lost your job, dealt with ongoing stress as you worried about sick loved ones, tried to learn how to homeschool scared and confused kids, or went through any other number of things during this turbulent and uncertain time. That’s a little bit what it’s like when people with chronic and invisible health conditions or disabilities go out in public, and people assume we are “not that sick.” Remember how excited you are for the end of quarantine the next time you see someone with an invisible illness out in public. Of course we are smiling and look happy! We get to see people again! But just because we’re out in public doesn’t mean we’re healthy or faking our illness. Many of us have a lot of experience with isolation and trying to stay connected from a distance. Quarantine has given more people a window into that world. It’s not unusual for me to go one to three weeks without seeing any friends or family (other than those I live with). This has been fairly typical over the last three years due to my illnesses, including dysautonomia, fibromyalgia, thyroid cancer, and ME/CFS. To some extent, I’ve also experienced this type of isolation throughout my life when my health conditions have flared up. Being homebound or bedbound is the reality for many people with chronic illness. I’m very fortunate that I’m able to get out, and I celebrate the weeks I’m able to be around friends two or even three times. That’s huge when you’re chronically ill! Think about it… think about how excited you are to see people after two months. Think about how much more excitement you would feel if you went months or years living with uncertainty, wondering when you would see friends again. Just because you’re smiling doesn’t mean what you’ve experienced isn’t real. Just because you’re happy to be around people doesn’t mean everything is all right. A smile can hide a lot of pain and suffering. Remember, not all disabilities are visible. Remember, you also can’t see “behind the scenes” — how much it takes for someone who is chronically ill to make it out in public or the toll it takes afterward. The joy we feel when reconnecting can so easily be dampened by fear of judgment or the assumption that just because we’re smiling, we must be “faking” being sick. I hope this example from quarantine helps people remember that smiling doesn’t equal “not sick,” and out of the house doesn’t equal “faking it.” Showing understanding and believing those you love with chronic illness is the perfect way to show them how much you care and have missed them! For more on the coronavirus, check out the following stories from our community: When COVID-19 Blows Over, Please Remember People With Chronic Illnesses An Activist-Therapist’s 15 Affirmations for Hope Amidst COVID-19 Hey You: It’s OK to Grieve the ‘Small’ Things You’ve Lost During the COVID-19 Outbreak 10 COVID-19 Emotions You’re Not the Only One Having What It’s Like to Be a ‘Highly Sensitive Person’ in the Time of COVID-19