This past May – May 12th International ME/CFS and FM Awareness Day – BHC patient and friend, Jo Ivie, decided to put a positive spin on the day and do something personal and close to home – she hosted a Chronically Ill Tea Party. We thought it was such an amazing idea that we asked her if we could share it with all of you.
While May 12th Awareness Day won’t roll around again for another 10 months, any day is a good day to bring connection, empathy, and a smile to people who share your struggles and understand your challenges. We hope you enjoy this story and it inspires you to find a unique and inspiring way to connect. Because we are stronger together and a shared struggle is a little easier to shoulder.
The Chronically Ill Tea Party
by Jo Ivie
“Fibromyalgia & Chronic Fatigue Awareness Day” can feel like, “Don’t Forget Your Life Really Stinks Day.” So I wanted to put a positive spin on it and throw a party! We cry enough, it was time to laugh! The goal was to have it be a nice luncheon where we could be ourselves, feel the support and friendship of other “Women Who Get it” and just have fun!
There are nine women in my neighborhood that live with these diseases whom I invited. My friends helped me by sharing ideas, gathering up teacups and helping me set up. I had so much fun with the decorations! As you can imagine the days before the party my preparations exceeded my energy envelope and I thought to myself this was a great idea but what was I thinking? I laid in bed exhausted wondering how I would even brush my hair for the party let alone throw it. My family was a big help and encouraged me to go through with it while we joked that if I had to cancel this would be the most empathetic group possible and more than half probably wouldn’t be well enough to come anyway!
Surprisingly everyone except two people came! We had a lovely lunch including a lemon cake my husband made for it. We also made sure those that were off sugar had substitutes like fruit and veggie trays. We chatted and laughed at how many times one of us would answer questions with “I can’t remember!” Everyone had brought one comfort item for a gift exchange. We wrote our names on a piece of paper and went around the room introducing what we brought. I drew out of a cup the name of the person getting the next gift. Some of the fun ones were a soft rice bag you could heat in the microwave, a CD of relaxing inspirational music, bulbs to plant for indoor flowers, a coloring book for adults, an owl nightlight for when you have insomnia and of course chocolate! I gave out as party favors signs to hang on your bedroom doorknob on bad days with funny sayings such as “PJ Day” and “The Mind is Willing, the Body is Not!”
Although it took me several days to recover, hearing one woman say that this was the first social activity she had been to in years (due to her health) made it all seem worth it! Some women were surprised by the others who came, not knowing they shared the same health problems because some never talk about it due to negative judgment by people who don’t “get it.” Many expressed that they wanted this to be an annual tradition.
I’m hoping that by sharing this idea, others will be inspired to try something like it even if it is only with one other person. Let’s unite and actually enjoy “Fibro & Chronic Fatigue Awareness Day!” Let’s find and celebrate that we have each other. This could even be done on social media: buy yourself some chocolate or ice cream, specify a time to get together online – on Skype or Google Hangout, via Facetime – and connect. There doesn’t need to be decorations or lunch but rather people with similar challenges getting together, supporting each other, having some laughs and leaving feeling a bit more courage, a bit more strength, their burdens a bit lighter because they feel understood and realize they are not alone in this fight!