These are some points that make up life with chronic illness. They are things that have changed in my life since I have become chronically ill, and show the change in priorities that I’ve had. A lot of them are things that go unseen by the people around you, or just aren’t things you talk about. Some of these points aren’t “invisible” per se, but the reasoning behind them may be unclear to someone on the outside. I’ve put this together in the hopes of creating more understanding of the experiences a person with autoimmune disease has.
1. When you know more about your disease than your doctor does
2. Felling isolated every day from the invisible pain you carry. There aren’t really words to explain how it feels to be hurting so bad and feeling that you can’t stand one more moment and have the people around you be oblivious to it.
3. Being saddened by social media — seeing all your friends and family going out and doing things is painful and makes you feel even more alone because you know even if you had been invited, chances are you would have had to stay home.
4. Living in a messy house — cleaning is just not worth the use of the little energy you have, since you have to use it to look after yourself, physically and mentally.
5. Taking so many pills each day
6. Trying every supplement under the sun
7. Getting a virus and not being able to identify whether you’re sick or just having another flare.
9. The constant battle between easy food and healthy food — you’d batch cook if there were ever a day you had that much energy.
10. The feeling of dread when you wake up and it’s a bad day
11. So many appointments. So many specialists, still only limited help.
12. Sharing so many posts about chronic illness because you just want someone to know what you’re going through
13. That feeling when brain fog takes over
14. Lowering your expectations of yourself. Then lowering them some more.
15. Learning to appreciate the little things
16. When the list of food you can eat is shorter than the list of food that you can’t
17. Wishing your symptoms would show up on your skin, and that pain was color-coded because then people could see what you live with
18. Having children is a great unknown — will you even be able to have them? And if you do, could you look after them?
19. When people tell you that you’re strong, you often feel the complete opposite. It’s hard to feel strong when you barely make it through the day.
20. Friends that come and have coffee with you in your pajamas are the best friends.
21. With all this time you can’t use, Netflix and the internet are your new best friends.
22. For all the clothes you wear now, comfort is the top priority.
23. A meal you didn’t have to cook is the best gift.
This was published by The Mighty.