24 Photos That Show What Being a Spoonie Really Looks Like

“Spoonie” is a term commonly used in the chronic illness community to refer to those who have limited amounts – or “spoons” – of energy each day due to their illness. Everyone has a different number of spoons, and the number of spoons you have varies from day to day. Based on the “spoon theory” by Christine Miserandino, the analogy of spoons can help explain what it feels like to be chronically ill. Each task you do costs a certain number of spoons, so you have to choose carefully which activities you choose to spend them on. And once you’ve run out of spoons, that’s it.

Being a spoonie not only means managing physical symptoms such as pain or fatigue, but constantly being aware of your condition and deciding how to spend your day. The life of a spoonie may be physically and mentally exhausting, but by slowing down and taking the time to think through each day, it can also encourage us to be more mindful and appreciate the small moments each day has to offer.

To better understand the spoonie experience, we asked our Mighty community to share photos that show what it looks like to be a spoonie. In these photos we see the immense difficulties of fighting a daily battle with your health, but we can also see how strong these chronic warriors truly are.

Here’s what the community shared with us:

1. “This is what it looks like being a ‘spoonie.’ I try to live my life to the fullest and not let any of my diseases or conditions and disabilities get in the way. Of course that is inevitable, but this was an amazing moment. Here I am at the beach with my fiancé and her friends and family after they dragged my wheelchair through the sand. I hadn’t been to the beach in years. I could post pictures of the procedures/surgeries/the months I spent in the hospital or the hundreds of medical issues I’ve had. But that’s not what my life is about. I try to not become my conditions. I am Leigh and I have so much more to me than being sick.”

2. “I have gastroparesis and fibromyalgia and here I am getting my weekly IV hydration infusion with anti-nausea meds since I am unable to eat or drink enough. By the time I get there, I’m so tired and feel so sick, so I just try to sleep. Then, after a few hours there, it’s time for my kids to get out of school and I have a little more energy.”

3. “I actually think I’m looking pretty damn sassy and fabulous here, but [the] reality of it is I’m waiting for surgery and I’m not fazed by it at all. I’ve had to sit so many times in those chairs and I’ve gotten so used to waiting for appointments and waiting in emergency [rooms] that when I’m in a hospital I could care less what I’m doing, look like or what’s even happening to me. In all honesty I think I was more worried about the wifi connection here than I was [about] the surgery that was going to happen half an hour later.”

4. “I have myalgic encephalomyelitis (ME). I had an appointment today and that’s it now. [I’m] flat out on the sofa trying to recover some spoons. I need a drink but can’t get one yet. I’m tired but hurt too much to sleep. I hide how I am from most people. Everyone sees the smile and the ‘I’m doing fine’ face.”

5. “This is lupus and fibromyalgia flaring up and hurting my knee, ankle and hip so bad I couldn’t walk without my braces and cane.”

6. “This picture is from this past Sunday. My husband and I strive to get out on what we call ‘5:00 adventures’ at least two or three times a week. I have to literally rest as much as I can as a mom before we get out of the house for about three hours on these little adventures we try to take. It takes time and energy just to simply get ready. And I’m usually wiped out by the time we get home. People always assume I’m doing good because the pictures I post on Instagram are usually from our 5:00 adventures we have twice a week. They don’t see what goes on outside of those two days.”

7. “Being a spoonie is the hardest thing, but as long as you can find moments of happiness and laughter, you will be OK. Embracing those moments, running with them and cherishing them makes coping with being a spoonie a little less difficult.”

8. “During the eclipse, I had a light sensitive migraine and was traveling on the road so I had to do everything I could to block out light. It still wasn’t dark enough.”

9. “I am 18 years old and I have been chronically ill since birth. It was always easy to hide – no one would have ever guessed I was sick by looking at me. I was afraid when they first placed my feeding tube because I knew I couldn’t hide it anymore. I was always afraid of what others would say when they found out I’m sick. I always judged myself because I thought I should be stronger. But I finally saw it one day – I am so much stronger than I give myself credit for. I’m going to look at that feeding tube every day not as something to be ashamed of, but as something to remind myself that no matter the odds, I’m doing it and I’m not going to stop.”

10. “Oh goodie, an alert. My heart rate is in the toilet, around 40 – now to try to stay conscious. Right in the middle of a nice dinner out with family. Because nothing screams ‘spoonie’ like a furry sidekick to notify you of oncoming doom.”

11. “[Lying] in pain trying to find strength to get up! This is my daily struggle and I live here in bed unless a rare feel-OK-day happens, then I have to tell myself don’t go too far or do too much but usually end up back here.”

12. “Another day stuck in bed with fibromyalgia and severe back and leg spasms. Just showering in the morning drains me. I’m 17 and live my life setting small goals each day. My fibro keeps me from working and just going out to a store for something small. I cannot drive because the spasms are unpredictable and can affect my hands and feet. So I do what I can when I have the spoons. But mostly I spend my days in bed because I’m utterly exhausted all the time.”

13. “Being a spoonie is fighting a war inside your body while pretending you’re fine 24/7. Don’t get me wrong, I was having an amazing time in this picture and it was definitely one of my ‘good days.’ However, you still can’t tell just by looking at me that the bathing suit I’m wearing is hiding a feeding tube and central line, that despite the very real smile I was still extremely fatigued and in pain when this picture was taken, and the next morning I almost had to go to the ER due to medication side effects.”

14. “Sometimes, no matter how hard you try, you just can’t handle it on your own and have to go to the ER which is even more exhausting than fighting your illness at home.”

15. “I am a new mom to a beautiful baby boy. He is just over 2 weeks old and I have been out of spoons for days. I have Chiari malformation type 1, POTS, irritable bowel syndrome with chronic constipation, polycystic ovary syndrome, PTSD, other heart issues currently in the diagnostic phase, along with the depression and anxiety that [often] comes with being a chronically ill person. Every minute is a struggle. I haven’t had a proper sleep for weeks, which has made my symptoms increase. In the photo my head is exploding, my chest is tight, my guts are cramped, my uterus is burning. I’m in head-to-toe pain with all the other fun symptoms, from fatigue to limb numbness and everything in between. I want to collapse and give up. But I can’t because this little guy needs me.”

16. “My basket of Crohn’s disease necessities in my bathroom at home. If only I could have all of these items with me every time I used the restroom…”

17. “Totally fine and even trying to be a normal person by auditioning for a musical by day. Ending up in the ER in the middle of the night because of a severe allergic reaction. Surprise!”

18. “Seizure at Disney World. But how can you have a seizure at the happiest place on earth? It happens despite what everyone likes to think. It gets in the way of my fun and the things I usually enjoy doing. I try my hardest to enjoy doing them anyways, but the illness and sickness and ick gets to me no matter what. Luckily I have my service dog to help keep me safe and alleviate the symptoms and make sure I can live a semi-normal life.”

19. “In this photo, my heart rate is sitting at about 135, after I tried to stand and walk slowly with a walker. I’m profusely sweating and flushed and nauseous in that photo. Zero energy, all pain and fatigue. Consequently, I was in bed for a couple days and slept long, sporadic hours for a couple weeks. This is what it is to have POTS. This is what it is to be a spoonie.”

20. “Two years – the time it took to find a doctor to treat me. It also happened to be my first two years of active RA [rheumatoid arthritis]. My feet and hands were destroyed in that small amount of time. I’m currently in a medically-induced remission and getting ready to have hand surgeries. Keep fighting, warriors!”

21. “Using saline in my nebulizer to thin my mucus lining and hopefully keep me out of the ER.”

22. “I think the picture is self-explanatory. I’ve got endometrosis on my bowel, low blood pressure and I made the mistake of eating some cheese… It would probably be a bad idea to share the blood or bodily damage, but I guess this is symbolic enough!”

23. “This is me and my boyfriend at midnight on his birthday in the hospital after I had a seizure at his birthday party. A fun night out can turn into pain, tiredness and a long wait in [the emergency room].”

24. “One day I am feeling good and smiling and the next day I am in the ICU fighting for my life. This shows how unpredictable chronic illness is and that things can change in a second. With chronic illness you have to live in the moment because you never know what the next day will bring.”