28 Things People With Fibromyalgia Wish Others Understood During the Holidays
Fibromyalgia affects an estimated 10 million people in the United States, and symptoms of the disorder include chronic pain, fatigue, sensitivity to touch and difficulty with cognitive functioning.
- What is Fibromyalgia?
- What Are Common Fibromyalgia Symptoms?
As a result, many holiday traditions can be nearly impossible for those with the chronic illness, and the added pressure of entertaining family during the winter months can cause a flare, or a rapid increase in symptoms. Fibro is unpredictable, and many misconceptions exist around the disorder.
The Mighty teamed up with the National Fibromyalgia Association and asked their community what they wish others understood about the disorder during the holidays, and what you can do to be more supportive of someone with fibro. Here’s what they had to say:
1. “Yesterday I could put up a tree, bake cookies and decorate the house, but because I did all of this, today I can barely move! Please understand I’m only superwoman one day out of 10!” —Leslie N Buck Ward
2. “I’m not being difficult or selfish when I have to bow out of something at the last minute. Fibromyalgia is unpredictable and can steal the joy from any day without notice.” —Judith Sorensen Morgan
3. “I love you, but don’t overstay your welcome.” —Lori Scheirer-Roth
4. “Even though [I’m] ‘up and about’ does not mean [I’m] up to helping in the kitchen for two hours and sitting in a hard chair at the table playing games for hours. Just because [I’m] there does not mean [I’m] not struggling every minute to be there.” —Jody Engler
5. “Stop telling me I look exhausted/in pain and should go lie down. I choose to deal with an elevated level of pain during the holidays because I love being with family and friends this time of year. I have pain every day. It’s normal for me. I’m fatigued every day. It’s normal for me. I don’t get to spend time with special people every day. That’s worth taking on a little extra pain in my books. Please don’t try to force me to give up the one thing that will put a smile on my face, and give me happy things to look forward to or to remember on bad days the rest of the year.” —Andrea Drajewicz
6. “Being tired is more than just needing to sleep; it’s a bone-aching weariness that takes over your body and stops you in your tracks. When I say I’m tired I really need to be left alone.” —Sally Sugden
7. “[I] just can’t take an Advil and go on.” —Rocco Giacumbo
8. “[I] can’t plan ahead for things. [I] never know how [I] will feel when [I] wake up each day.” —Susan Dutton Reichert
9. “I’m sorry I cannot do Christmas like I used to, and that hurts me as much as the fibro does.” —Rochelle Russell
10. “Shopping is much more difficult, not just because of the pain but also because of the fibro brain fog! I used to have it all under control: the shopping, baking for the goodie plates, the decorating, but now it’s twice as laborious to get anything done.” —Debbie Hinshaw
11. “Getting to the holidays is like running a marathon, and waking up that day with family and friends is the goal. I take extra time to get dressed, to cook and to show up on time. Once I show up, it is important to understand I won’t make it through the day together no matter how hard I try.” —Jennifer Walker
12. “Fibromyalgia doesn’t if care of it’s a holiday or not. My mind says, ‘Go,’ but my body says, ‘Maybe next time.’” —Jennifer McCoy
13. “I’m not able to afford all the gifts you want from me because I’m living on disability and have a running ‘tab’ with all my doctors.” —Jeannee Prince-Coco
14. “I’m really in pain while I’m cooking, preparing, serving and cleaning up afterwards. The pain in my shoulder blades, lower back and feet is excruciating by the time I’m done with everything. I strive to maintain a smile and happy attitude, but when I say I’m ready to go home or I need to lay down, it’s because I’ve crossed over the level of tolerance.” —Wilma Flores Lopez
15. “The holidays can also flare up depression, and we need you, but often can’t ask for help. We just hope someone cares enough to figure it out.” —Calliope Jane
16. “I am not a scrooge.” —Amy N. Lane
17. “I won’t magically be pain-free and full of energy just because it’s the holiday season.” —Maryanne Tong
18. “Please don’t tell me to have a positive attitude and that you know I’m strong enough to push through it. You only make it worse when I believe you, push through and end up unable to move for days.” —Sylvia Bilanzola- Baccega
19. “Even though I put on makeup and took meds to look good, I may be writhing in pain inside. So when you say “But you look fine!” it’s actually an insult to my pain, my well being, even my intelligence!” — Marlene Altman
20. “I wish my doctor had a clue! I’m going to wish for Santa to bring him one.” —Tonyia Sooter Canales
21. “This ‘unwanted gift’ of fibro has no return policy… We do not choose this, and it’s not enjoyable to be exhausted and in agony all the time.” —Carolyn O’Brien Collins
22. “The cold makes the pain more intense.” —Marie Balcerak
23. “I always say at parties, ‘I have to leave early due to a prior commitment.’ They don’t need to know it’s a bubble bath!” —Patricia Taylor Numberg
24. “Shop ’til you drop is a real syndrome in my world.” —Tonya Nealy
25. “Please let me have the comfy chair.” —Amanda Crumpton
26. “The perfume or candle fragrance you love may be overwhelming due to some of us having hypersensitive olfactory receptors.” —Diana Barkley Avery
27. “Gentle hugs!” —Sondra Netzband
28. “While I am happy to be with family and friends in a festive atmosphere, sometimes that is all I can manage, just to be with them. There may not be energy to party hearty, but it is still nice to just sit back and feel like I am still a part of the celebrations.” —Frances White
For more information, be sure to visit the National Fibromyalgia Association’s website and Facebook page.
*Some responses have been edited and shortened for brevity.
MORE ABOUT FIBROMYALGIA:
Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.