By: Veronica Vivona

When you live with fibromyalgia, what the outside world sees is oftentimes different than what life is like behind closed doors. You might seem put-together to your friends and family, but they could just be seeing you on your good days. What about your bad days?

Because fibromyalgia is an invisible illness it can be easy for others to assume you’re healthy even if you aren’t. People might think you have it all together when, in reality, it’s the exact opposite. Your house could be a mess with sticky notes reminders littered everywhere or your hair might be unkempt because washing it is too painful.

That’s why we asked our fibromyalgia community to share photos they wouldn’t normally want others to see. If you relate to these photos, know you aren’t alone. There’s a whole community of people living with fibromyalgia sharing their experiences and challenges.

Here’s what our community shared with us:

1. “This is only a small part of my bedroom mess. I never have enough energy to put away laundry. Doing laundry hurts because I have to carry it up and down two flights of stairs. I have a clean fold pile, a clean hang pile and a dirty pile. But really, it just goes from pile to pile. I know people think I’m just lazy, but it’s just too much!” – Stephanie G.

clothes in room on floor

2. “It is so difficult to comb my hair and tie it up so, on particularly sweaty days here in Delhi, all I manage is to put it up, held together up by a pencil. This is my spoonie life.” – Pooja P.

woman's hair in bun with pencil

3. “So I don’t take pics of myself, but recently my oldest sister was away in hospital. So I did! We are each other’s comedy/cry/scream support!” – Heather B.

woman with towel wrapped on head

4. “My feet after trigger point injections. I was getting them from the back of my head all the way down to my feet. I have myofascial pain syndrome and chronic migraines, as well as fibro, and the trigger point injections helped with all three.” – Jilly M.

bruised feet and pink toenails

5. “Treating fibromyalgia is a full-time job. This is a picture of one of my medication drawers with my scripts, OTC medications, creams and heat patches. Sorting them, taking them, filling scripts, ordering them online, deciding on heat or ice or medication, stretches, doctor appointments… all on top of the actual pain, fatigue and lack of concentration that comes with fibromyalgia.” – Alexandria P.

medicine drawer filled

6. “All the meds. I have several chronic illnesses and I feel like pills dominate my life. I have timers going off throughout the day reminding me what to take and when. Needless to say, my pills are not very organized.” – April C.

woman looking at camera with medicine bottles behind her

7. “When you hurt so much that you are unable to lift your arm to do your hair.” – Murphy Z.

curly wavy hair flipped

8. “A day’s worth of notes and reminders to myself. (Yellow Post-it’s flipped due to personal info.) My diary is full of random stupid things that I won’t remember because my brain can’t retain information. Thanks, fibro-fog.” – Samantha K.

planner with sticky notes sticking out of it

9. “Having a crappy couple of days and can’t do the pots. I hate the house being like this.” – Amy G.

kitchen counter with dirty dishes

10. “This is me on a bad day. I have many bad days. People don’t get to see this. I look like I could haunt houses.” – Merilyn C.

woman in grey shirt looking at camera

11. “My kneecap is misaligned from a childhood car accident. It ‘pops’ out of alignment and I fall. My legs are covered with bruises nearly all the time. I wear leggings or tights under my dresses.” – Kimberly D.

legs with bruises all over

12. “Laying on the couch after tossing and turning all night in bed from back, hip and neck pain. I tried to sleep, but I still can’t get comfortable. So I’m awake watching TV while moving constantly on the couch because it’s absolutely impossible to get comfortable.” – Caitlin J.

blankets on couch with door in background

13. “Heating pad on my neck because I’ve spent all day pretending it doesn’t hurt 24/7. I’ve run out of comfortable sleeping positions. At least the heat gives me some temporary relief.” – Shannon C.

woman lying on heating pad

14. “This is embarrassing, but this shows laundry everywhere. My house is an absolute mess. On bad days, I can’t do much and good days, I don’t want to stay inside.” – Samantha S.

laundry on top of couch

15. “Fatigue and black eye bags in the first photo. My greaseball hair after not being able to wash it due to my scalp pain [in the second]. Last photo is me in bed exhausted after washing and drying my hair.” – Victoria C.

woman with blonde hair in three photos

16. “Everyone thinks I’m a very holistic person due to my essential oils always being in my night table. What they don’t know is that it’s on top of my painkillers. I remind myself to wear the oils so it calms the pain for at least 15 mins.” – Caro A.

essential oils on table

17. “Bags under my eyes from another restless night. Short hair because it’s easier than long hair. No makeup because I can’t hold my arms up that long. Soooooo tired.” – Sam B.

woman with short hair looking at camera

Looking for more helpful advice from The Mighty’s fibro community? Check out these articles about fibro and chronic pain:

Leave a Reply

Your email address will not be published. Required fields are marked *