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26 Photos of Spoonie Life You Might Be Able to Relate To

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More often than not when living life with a chronic illness, you tend to look “normal” to outsiders looking in. They don’t see the reality of what your life is like. Even when we take pictures of what we’re going through — documenting hospital visits, testing procedures, flare ups and changes to our appearance — these aren’t always the pictures we post on social media. They typically go unseen to the outside world since we feel like we have to keep them to ourselves. Until now. Here are 26 photos that you may be able to relate to if you’re a spoonie.

1. “Posing and making funny faces to post on social media because you’re in the hospital again while in reality you’re having a breakdown because you’re so scared.” — Kaitlyn R.

2. When the power is out, it’s summer, you’re surrounded by wildfires… Oh! And a lyme flare/herx so you feel super sick on top of being super stressed.” — Misty W.

3. “Me and my pregnancy pillow! I’m not pregnant… but it helps so much with sleep and pain. Plus also for anxiety and feeling safe.” — Sally A.

4. “VIG infusion days via a power port for the treatment of CIDP (chronic inflammatory demyelinating polyneuropathy)” — Hurtado-Palomo

5. “I generally have beautifully painted toenails. Why? Because I’m often looking at them as I’m stuck on the sofa, even though I would rather be doing other things.” — Gabbie J.

6. “Having to lay down because I took my kids to school and that simple act drained all of my energy. Some days even just going across the house can seem like a marathon.” — Bonnie P.

7. “This one at least made us laugh! The radiologists couldn’t find my newly relocated kidney on the imaging and this is what they said to me.” — Meghan W.

8. “This is for my spoonies still working the floor as medical professionals ourselves. Especially with all the PPE during COVID we so easily blend into the background at work and look like every other tech/nurse/doctor. They don’t see the abdominal compression and compression stockings underneath the scrubs or the stash or salty snacks and electrolyte drinks in my locker. I may look like just another nurse, but when you come in exasperated desperate for answers I’ll always actively listen and try to get you answers because I know that feeling.” — Leanna T.

9. “My fur babies giving me comfort after having several seizures.” — Lorrie J.

10. “The simple joy of getting dressed even if it is in pjs that don’t match lol and I’m cuddled up on the bed.” — Leefern C.

11. “Hospital woes…heart going crazy and having severe chest pain.” — Jae M.

12. “We are not alone. My family are superheroes to me! I have spent years going in and out of doctors, ER and the ICU. The people you love are the reason why you push through situations you just don’t have the strength for. Being so ill for so long I can feel trapped in the darkness of my illness, my love ones are my light! I fight for them and every moment in this battle is worth every moment I get to spend with them!” — Kat W.

13. Your favorite movie on a bad day.” — Morgan N.

14. Patch testing for systemic contact dermatitis and feeling like a science experiment. Induced anaphlyaxis, an ER trip and figuring out how to calm that flair down all by myself as usual. Known I have papillary thyroid cancer and hashimoto’s thyroiditis. Ruling out mast cell activation syndrome, POTS and now systemic contact dermatitis. I am allergic to life.” — Chloé R.

15. “Here I am propped up in my bed with a heating pad, wrist splint and my CPAP machine. Was in pain, having heart palps and having difficulty breathing.” — Misty L.

16. This is my monthly pill case set up day. It usually takes me one to 1.5 hours from start to finish, but then I can (usually) not worry about it for a month. Unless I have a procedure, which might change my med schedule. Or if a doctor adds, changes or removes a medication. I’ve had to try half a dozen different pill cases to find a system that worked for me. I take a (large) handful of pills three time a day, both medication and supplements (all monitored by doctors of course). That doesn’t include the weekly injection I take for my lupus, or my monthly injection for my migraines or my insulin pens. I had to process through instinctive “medication guilt,” which is compounded when someone tries to tell me I’ll be better off without medication because (insert reason). Side affects suck, I hate feeling reliant on medication to get through each day. But the thing is… they work. So I no longer pay attention to those who try to guilt me about it. It is what it is, and I’m grateful for the medication that can help me recoup some of my quality of life.” — Nina H.

17. “Literally a month apart… first one after a flare of autoimmune disease the second four weeks earlier. Life can and does change in a heartbeat when you live with chronic illness.” — Michelle F.

18. “A week’s holiday from work: two days gently exploring countryside and resting in between short walks = three days in bed to recuperate from the exertion. Life with chronic migraine and autoimmune flare up.” — Lieu L.

19. “Sitting on my futon upside-down because of swollen feet.” — Alicia W.

20. “Getting told you are not really a candidate for a liver transplant and yours are quickly declining. Nothing like receiving news that devastates when your support system can’t be with you.” — Brittany H.

21. “Crying in the ER. ER doctor didn’t know what to do with my rare illness so instead he invalidated and pushed me aside. Which resulted in me being sent home and nearly losing my life in another ER later that day.” — Kendra J.

22. “Bruises for being stuck so many times for IVs and blood work while in the hospital.” — Jacqueline E.

23. “One script – over $2k a month. All of my meds over $5k a month. Thank goodness for amazing insurance! I feel awful for those who are not as fortunate.” — Veronica T.

24. “In an intestinal failure unit and trying to get my feelings and needs across!!” — Katie B.

25. Just a few months ago I was having a fibro flare/ intense migraine combo. I know we all have weird ways to relive pain. Mine that night was wrapping a towel around my head and put lots of menthol patches on my face.” — Jojo S.

26. I use video games as a distraction when I’m having a bad day…but do I look like I’m having a bad day? I have makeup on, I’m smiling, and my hair is fixed up. When you don’t feel the way you look on the outside.” — Jennifer M.

Originally published: September 21, 2020
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