A Letter to Spoonies (and Myself)


Dear spoonies, and me,

It is OK not to fold your laundry if you suddenly feel too fatigued to do so. It is OK to lie down if you are at your relatives’ house and get to feeling dizzy. It is OK to find space for yourself. It is OK to feel sad that you are going through such pain. It is also OK to feel grateful of how strong it has made you. It is OK that you have been to numerous doctors and stayed in hospitals for so long. It is OK that it costs a lot of money, because it is not your fault in the slightest if you need help.

It is OK that you can’t finish tasks as quickly as others. It is OK that you can’t finish tasks in one day that some people finish in two hours. It is OK to ask for help if you need it. It is OK that some people don’t understand; that is not your fault. It is OK to have moments where you actually feel healthy, but then crash without reason. It is OK to feel sad about that. You don’t have to beat yourself up for not doing “enough” to feel better. Because believe me; I know you would make yourself feel better if you could.

It is OK to take one day; two days; 30 days off. It is OK that you don’t have everything figured out right now. It is OK that you’re still trying to find a job that doesn’t make you tire out easily. It is OK that you go to the doctor so much. It is OK that that’s difficult. It is OK to lie in bed with a mug of tea and spill it on yourself because you’re too weak to hold the cup. It is OK to laugh at how downright ridiculous some days can be.

It is OK to joke about your chronic illnesses, and it is OK if you don’t want to joke about them. It is even OK to continue joking if others tell you you shouldn’t. It is OK not to believe everything you hear. It is OK if doctors don’t understand you; you live with yourself, and they live with themselves. People are different.

It is OK to want to throw your hands up and call it quits, because I know you; I know you will get right back up and start fighting again. It is OK if you collapse doing a task that others think is simple. It is OK if people tell you to push through it and you feel hurt by that. It is also OK to tell those people that those words made you feel hurt. It is OK not to push through it when people (or you) tell you those things.

It is OK to speak up for yourself. It is OK to be your own advocate. It is OK to throw a tissue box across the room and yell because you feel so upset. It is OK not to be OK. It is. Really. It is OK to have days when you smile because things are going so well, and it is OK to have days when you frown because things really suck. It is OK that people think you’re faking it, because they simply don’t know, and you do, and they may never understand. That is OK because not all words are true.

It is OK if you have a mental illness, too. It is OK to be disabled. It is OK to use special devices in public and not feel ashamed of them, and it is OK if other people stare at you for it, because that is more a reflection of their hearts than it is of yours. It is OK to feel hurt when you are insulted, frustrated when you are fatigued, angry when others try to fix you, terrified when you have a flare-up, irritated when others say things that hurt you, sad when nothing seems to be going right, teary-eyed when you hurt so bad, shy when people ask how you are; you feel what you feel, and you can’t change how you feel. You can’t change how you think, either, although you can change how you respond to those feelings and thoughts.

It’s OK. It’s OK to constantly fight this. You’re still you. Your best is your best. People don’t understand that, and if they did, it’s because they (or someone they know/love) have gone through it.

It’s also OK not to smile at people if you feel crappy, and it’s OK not to say “I’m good” when others ask how you are. It’s OK to just say, “I’m making it,” or “Today’s not so hot,” or “Today is horrid.”

Be gentle with yourself.

Be honest with yourself.

Be real with others.

Others judge. But please don’t let their judgments affect how you see yourself. You are so strong. You are so brave. You are so resilient.

And you know what I think?

We all have silverware. Some carry forks; they can take a stab at life and get a lot in one forkful. Some carry knives; they have the privilege to cut their life into small pieces, or take it in large chunks. But you, my friends, carry spoons, and it’s OK that you can’t grab everything off the plate. You do your best, you give your all, and that will always be enough.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images




A Letter to Spoonies (and Myself)


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

woman sitting on bed thinking and looking out window

30 Thoughts That Go Through My Head in a Day With Chronic Illness

Every day with a chronic illness is unknown. There is always the unknown. Will it be a good day, or a bad day? Will I get done what I wanted? Will I feel accomplished or not? These are some thoughts that go through my head on a regular basis because of my chronic illnesses. 1. [...]
girl dressed as superhero on building roof

We Can't Keep Leaving Chronically Ill Patients Alone to Coordinate Their Health Care

“Oh no,” I thought, “another birthday.” Little did I know I would receive a surprise birthday gift – shingles – a herpes zoster reactivation. “Just a virus,” but this one was a whopper. I went from being more fit than people half my age and exercising every day, to needing two naps a day. The anti-viral [...]
Christmas party at a bar, focus on foreground decorations

How Do We Talk About Our Illnesses in Social Settings?

As we gather around family and friends, have you thought about what are you planning on sharing about your medical condition? I have struggled with this topic for years. Living with two invisible illnesses, I am constantly told I look great, many times after having a terrible night with breathing and trying to hold on [...]
woman pulling her hair

When People Closest to You Give Unwanted Opinions About Your Chronic Illness

There are so many people out there in the world who rush to give their opinions on what chronic illnesses are or aren’t and what they think will cure them. Usually, those opinions, more often than not, are based on judgmental presumptions, half-baked facts and an irrelevant article they once read about an entirely unrelated [...]