27 Photos People With Fibromyalgia Want to Post on Facebook, but Don't

If you have fibromyalgia, it can be difficult to decide whether or not to post photos of your life on social media. Although we should all be able to be honest and real in how we portray our day-to-day, sometimes the potential misconceptions and judgments we may receive from others prevents us from doing so. It can be scary to be vulnerable about a “bad day,” but only posting about “good days” can cause some to think your illness doesn’t affect you much and “isn’t actually that bad.”

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

Posting on social media is a personal and often challenging decision. While you shouldn’t feel pressured to post anything you don’t want to, it can also be important to give a realistic representation of fibromyalgia to help increase understanding and awareness of this illness. So, we asked our Mighty community to share photos they wanted to post of their lives with fibromyalgia, but didn’t. Let’s shed some light on what it can really look like to have fibromyalgia.

 

Here’s what the community shared with us:

1. “Had to wear an EEG for a weekend because my doctor thought I was having strokes… Nope, just fibromyalgia.”

2. “This is my reality. A basket full of pills (none of which are prescription painkillers), daily items most can just get up and get whenever they need them. I need everything to stay at arm’s reach.”

3. “Me in my new onesie my hubby got me for Christmas. I can’t wait to get home every day and get out of my work clothes but my fibro and CFS [chronic fatigue syndrome] make me so tired I can hardly get dressed again. Hubby bought this to help. Never posted it because didn’t want to explain why I had child PJs at 43 and because my weight gain from the Hashimoto’s is more than I can take sometimes.”

4. “In this picture I’m in so much pain. I promised my twins I would take them to Busch Gardens. My daughter said, ‘Smile, Mommy!’ for this picture. I was afraid people would think I’m ‘all better’ because I’m out with that all-too-familiar fake smile.”

5. “I didn’t post this because it really reflected how exhausted and much pain I was in… I was in the middle of a flare caused by going on a short trip with a friend. I didn’t want her to feel bad and I didn’t want other friends to stop inviting me to spend time with them – even if I have to cancel last minute or can’t go, it still feels good to be invited.”

6. “My service dog doing deep pressure therapy which helps with the pain in my legs.”

7. “[This] is a picture comparing my feet on Sunday, Mother’s Day this year and Wednesday, a few days later in the hospital. I wanted to share with my friends the simple struggles we all endure and how they affect our lives every day. Our symptoms may be invisible but our struggles are very real.”

8. “Me with my son at his college orientation. 17,000 steps in 30 hours, in a heat index of 103. I finally had to sit and let him go get the car, and then I cried. I didn’t post it because I didn’t want my exhaustion and weakness to show. He’s used to it and he’s happy to have me with him. Should have let him push me in a chair.”

9. “Me in the hospital this week due to severe acid reflux from too much pain meds. Painful and exhausting.”

10. “Another day, another doctor! No one knows how much time I spend seeing different doctors and specialists.”

11. “Inflammation flare coming from a deep pain within the left side of my neck and therefore goes into the left side on my face, from last night. It’s freezing cold and I am not near a heater or in bed. It just does this. My other side is completely white.”

12. “My daughter and I enjoying a weekend. I don’t like to post these things as people judge and think I’m fine and I don’t have any pain.”

13. “This is me on Christmas last year. My husband and I decided to have it together at home. I was so excited for a relaxing, amazing day. However, just the day before I came down with the flu. I always catch anything going around due to a weak immune system, [and it] also flares up my endometriosis and other issues, so I stayed in my pajamas all day and lay on the sofa, not moving for most of it. I didn’t end up posting as I felt rough, I look drained, have no makeup on, no hair done, [I was] in a PJ top and in all the photos all day I had a bright red nose.”

14. “I used to be super active, and recently lost [a lot of weight]. But then I developed POTS [postural orthostatic tachycardia syndrome] and fibromyalgia. I cried the day they told me I’d have to use a cane. I got a staff instead. It makes me feel powerful. Anyway, I still haven’t posted any photos of me with my staff since I started using it in March. All of my friends and family know. I mean, they see me with it in real life. But I still can’t bring myself to post a pic with my staff. I think it’s because it would make it real in a weird, existential sort of way.”

 

15. “Complete exhaustion and severe pain for two weeks. I only was able to get up with help to go to the bathroom and change my clothes. Currently, my couch has 13 loads of laundry on it because I am saving my energy for more important things…like my three children. Exhaustion is always lingering over me. Simply doing a small flight of stairs makes me have to lay in bed sometimes up to a half hour.”

16. “Trying to be a mom with so many personal ‘issues’ is such a challenge. This picture is when I first got my CPAP. I have fibromyalgia, severe sleep apnea and a back injury. I’m so glad my baby can still come snuggle with me even while I’m attached to a hose! I would never share it with friends because I hate that I look so horrible when I sleep. I’m thankful my husband still thinks it’s ‘cute’ and we can joke about it.”

17. “I am having a bad pain day and my baby is comforting me. I didn’t post because it’s the middle of the day and I don’t want to be seen as lazy. It seems people think I’m making my illness up sometimes, maybe to get attention. I had a list of things to do that day but I just couldn’t. My pain was overwhelming.”

18. “This was me before getting my port surgery to help manage my pain. I didn’t post it because I didn’t want people knowing I had the port at first.”

19. “This is all I have to manage my pain. I’m too afraid of being portrayed as a ‘drug-seeker’ to get something more effective.”

20. “What many of my days look like. I decided to stop posting these things. I fear people get tired of seeing it or hearing about it. I’d rather post fun, happy days. Days when I am able to do my hair and makeup. Days I get out and am active.”

21. “I have fibromyalgia. [It’s] been six years. I don’t post a lot of pictures of me due to the weight gain, plus this was at work. I work four days a week [with] three days off. I hurt all the time. I miss the old me.”

22. “The things we try to manage pain… Just had Gua Sha (scraping) done with my massage this morning. It was painful and causes bruises that looks like a like hickeys, but my back already feels more loose and comfortable. I’ll try anything!”

23. “My house is in a constant state of mess until I have enough spoons to deal with it all. My floors are in desperate need of vacuuming, sink overflowing, three loads worth of laundry in the dryer needing to be folded and bags of trash to be taken out. I’ve gotten better about not stressing about it though.”

24. “Collapsed with exhaustion, fatigue and pain at work (a school). Just had to be horizontal. Found a mat from a storeroom and slept behind my desk for half the day. My immediate colleagues were so understanding but if anyone else walked in – staff, students, parents – can’t imagine the repercussions.”

25. “My daughter is still smiling even though she is in so much pain.”

26. “Four years ago, I joined a boxing club. I found health and strength I didn’t know I had. Upon turning 50, I imagined I would move forward [with] my health and fitness. Instead, I have gotten weaker, fatigued and unsure of myself. While I continue to go, this view is getting more common. The staff is great. They encourage me and make sure I don’t overdo it. Still, I wonder and worry what the others think? I must be unfit, lazy, etc. I’m always on the outside looking in.”

27. “People like to judge based upon appearances. This was my third night in Las Vegas out celebrating my boyfriend’s birthday. When we got back to our room, this is what I looked like sleeping on the pull-out couch because of my pain and insomnia that I didn’t want to affect him. You never know what someone is going through – compassion and empathy go much further than you’ll ever realize.”