Chronically Insecure

A lesser-known side effect of this awesome chronic illness journey I have been on my entire life is a whopping sense of self-doubt with every action I take in my life. This is something as small as what to wear (which can take 3 Pinterest boards, 6 phone calls to my sister, 8 outfit changes, and photo confirmation with at least two friends on any given occasion) or as big as where to live, who to date, any and all medical decisions, picking out a nail polish color... You name it. I don't often make decisions without TONS of preparation and research; unless I am having a confidence crisis and someone convinces me their decision is better than mine. I don't believe in myself and I don't trust my instincts.

Growing up I thought I was sick all the time. Turns out I was, but since what I was sick with wasn't a "thing" yet, everyone told me I was wrong and that I was fine. This was my mantra every morning when I woke up crying in pain or clutching my stomach or throat - I am wrong, I am fine. I am wrong, I am fine. I am a hypochondriac. Everything I am feeling is a lie. They tested me for the flu, they tested me for strep, my Mom diligently took me to doctor after doctor and they are smarter than me. They say I am wrong and that I am fine. I am wrong, I am fine. This has influenced my way of thinking for everything for my entire life. Every time I feel like something should change or be different I am reminded by my continual internal monologue that I am wrong, I am fine. If I don't feel good? I am wrong, I am fine. I walked on a broken foot for 6 days because I convinced myself it didn't hurt as bad as I thought it did. I am wrong, I am fine. I hung out with people who were bad for me, made fun of me, treated me poorly... It didn't feel good. It didn't matter because they were laughing so clearly I was wrong. I was fine. I allowed people I was peers with on every level (kindergarten through college and every job I have ever had) to make me feel bad about my skills and my abilities; of course they were right; I was wrong. I was fine.

I apologize. I always apologize. Doesn't matter what the situation is, doesn't matter who is involved or what happened, it's always the same; I am wrong, I am fine. I am sorry I was wrong, you are right, I am fine. I have a very clear memory of being asked to stay after class by a geometry teacher who had just yelled at the class for cheating and said she would find out who did it. I immediately began crying. I didn't cheat, nor did she think I did, she thought I could be trusted and wanted to talk to me. My immediate thought is always that I have done or will do something wrong. On the same line, confrontation of any sort has always been an issue because clearly I am wrong. I am fine. At one of my previous jobs there was a coworker who bullied me incessantly for my health issues, to the point of bringing me foods I was allergic to as a "joke", even ones that could cause anaphylaxis on contact. I would remind them gently that I couldn't have it and they would laugh and laugh. I had one coworker that I confided in that tried to get me to stand up for myself and eventually I broke her down, too, with my mantra. If you repeat it to someone enough they start to believe you, too. I am wrong, I am fine. It's fine. I am wrong, I am fine. It's all fine.

It's been 27 years of being wrong and being fine. The night I died I went to bed knowing I didn't feel right. I had texted coworkers telling them I didn't feel good and that I may be in need of some help the next day. I asked my roommate to check on me because I knew I did not feel good. I took my regular medicine and took pain medicine because I hurt and I knew I wasn't feeling good but in fairness I never am and if I always complained about being sick, I would always complain. I do not take pain medicine unless it is an emergency so clearly somewhere in my head I knew I wasn't fine, I just couldn't get that thought to the front. I pushed it back with all the "wrong/fine"s until I convinced myself I should just deal with it and get over it. The whole waking up three days later being extubated from life support changed my perspective a little. I was not wrong. I was not fine. I am never fine. I am always hurt, I am always in pain, I am always struggling.

I know this now, I do. It's in there. Pushing this to the front and beyond the mantra is going to take a lot of work. The problem with chronic illness is that other people's tolerance for it eventually runs out. They say, "I hope you feel better soon!" genuinely hoping you feel better soon; then a week goes by, then a month goes by, then a year... It's tiring wishing someone would get better and they just won't. So you stop sympathizing. Then you start thinking they could be better if they tried. Then you wish they would get over it. Then they lie, "I am wrong, I am fine!" It's easier and better for everyone if that's the answer. It genuinely feels that it's better to convince everyone and myself that I am wrong and I am fine. It gets to the point of being wrong and fine about every single thing in my life, not just health, because if I can't even be right about what I feel in my own body, clearly I can't know what's the right thing in any other situation.

I'm going to get over it eventually. I've started answering people with realistic answers when they ask how I am doing. "I am 4% away from total lung failure!", "I am on 32 medications a day for the foreseeable future and I just barfed 3 times!", "I am crying because not dying hurts and is very overwhelming!" ... Honestly it helps. I don't think anyone wants to hear it but if I smile and nod and say I am fine one more time, I don't think I ever really will be again. Maybe one day, confidence in the truth of my answers will become the confidence in my ability to recognize that I am not wrong and I am not fine; my confidence in my ability to recognize that may become confidence in my ability to fight to get where I need to be.