Since the middle of the summer of 2016, I've been SICK. I use all caps to refer to this time, because all lower case just doesn't seem to describe it accurately. After my Christmas visit to my family, I decided to start a list of what I've learned by being SICK. I know as I start feeling better, I may forget some of the struggles I encountered.
“Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness.”
― S. Kelley Harrell
1. The accuracy of "The Spoon Theory"
2. Seasons come and go before you can blink. You spend all your energy on everyday tasks and never get to spend time enjoying the seasons. So they disappear before you've even greeted them.
3. The chronically ill warriors spend multiple spoons every day just to appear fine. They aren't.
4. The people who ask you how you are doing, then stop and wait to really hear, are the rare beautiful gems of friends. Especially when they end it with a hug.
5. Something you've always enjoyed can become your biggest daily obstacle you have to overcome.
6. It is hard to teach awareness without passing over into annoying.
7. Some people may distance themselves but it isn't always your fault or theirs. Some people may become distanced from you simply because you no longer have the energy to do the activities you used to do with them.
8. It takes an unexpectedly large amount of energy to work, eat, clean yourself, keep your home manageable, and it's stressful picking outfits is when you're frequently hit sudden bloating.
9. Family close to help you in your hardest moments is something to be thankful for. Friends who volunteer to take on that role deserve medals.
10. When someone gracefully accepts your RSVP withdrawal, it can be the biggest stress reliever that day.
11. Your body can make you feel unbelievably hopeless and out of control.
12. When someone sends me a recipe or article about my new gluten-free life, it touches me more than they probably realize.
13. It's crucial to have a strong bond with your partner when you become so sick you have to rely on them to keep you alive. (I wish I was exaggerating.)
14. A a supportive employer, boss, and coworker team can reduce your stress. Weekly doctor appointments, in and out of hospitals, new symptoms every other day for 6 months, can take a toll on you. It's a great gift to not feel as if you have to hide your illness from your work.
15. That no one should ever feel bad for trying and failing. Every person that has tried to make me feel comforted and safe has truly made me feel so touched. It's okay to slip up and offer me a cupcake or accidentally cross contaminate me. Gluten-free has a big learning curve.
16. Everyone has their own struggles. Many are unspoken but not any less.
17. It's not easy to empathize when you've never experienced something similar.
18. Understanding and being inclusive of others is a skill that's underrated.
19. Why don't more potluck events consider special diets? Why can't we label our dishes "dairy free", "gluten free", "vegetarian", "vegan", etc?
20. Seeing a psychologist regularly is worth the cost.
21. You can feel immense levels of guilt by being sick. You can't meet everyone's expectations of you when you can't control your body.
22. Health care is expensive. I quickly realized researching my medical issues extensively was very important. (Who cares if others accuse you of using google as your doctor if it helps you.)
23. There is a deep constant desire to be understood when you have an undiagnosed illness. People have a hard time being supportive when it's a long list of symptoms and there's no label on your illness.
24. You have to learn to fight for yourself when you see doctors. In my 6 months of true illness, I found only one doctor who didn't want to push me out the door with a diagnosis of another symptom and not the cause.
25. What you eat plays a bigger role in your life than you realize.
26. My life has possibly been more difficult because I was undiagnosed for 28 years. What opportunities did I miss by not knowing sooner?
27. Mental illness symptoms can be caused by underlying diseases.
28. You can be so tired you don't want to eat.
29. It is far too easy to unintentionally push people away from you by sharing just a small portion of your medical issues with them. It doesn't take long for them to start feeling dragged down. Sharing your illness with others can be a burden on them.
30. Having at least one person in your life who always answers your tear-filled phone calls is a blessing.
31. Exercise can be missed. I bought a brand new road bike in the beginning of my illness. I've only had the energy or health to ride it twice. For months I wished I could ride it without feeling miserable. I often had to stop and rest if I did a flight of stairs. Frequently when I got home from work, my only option was to nap.
32. That when you are SICK, your priorities change drastically. I never thought school would drop so low on my list.
33. I never realized that listening to friends' problems and providing support would cost a "spoon."
34. You can't overcome being SICK with willpower. You learn quickly that you have no option but to listen to what your body tells you to do.
(This list may be updated as time passes. The order is simply the order I came to think of them.)
If you've ever experienced something like this and would like to make a suggestion to my list, please comment!
