GUEST POST #2: still sick

Hi my name is Claire, or @chronically_claireann on insta. The beginning of this rant was written by Coffee Spoonie @coffeesponnie on Twitter. And the rest I wrote. She inspired me to get something’s off my chest about how it’s difficult when people see me happy and then think I’m cured and don’t believe me when I am not doing well, unhappy, and still sick. 

As a person with many chronic illness I am constantly worried about people using my good days against me. MY GOOD DAYS are NOT my standard. They are the EXCEPTION. They don’t give you permission to raise the bar on what you expect from me and to then act disappointed because I don’t meet that standard of “HEALTH” you’ve set the next day and the day after (@coffeespoonie). Just because I was able to do it yesterday but cannot today DOES NOT MEAN that I am choosing not to, do not want to, or am being lazy. Just because I was feeling better for 4 days DOES NOT MEAN I am cured. Just because my blood values have gotten better DOES NOT MEAN I’m cured. It means that things have slightly improved for the time being. CHRONIC ILLNESS means CHRONIC I will live everyday of the rest of my life with these illnesses and I will die still having these illnesses. Please leave your “alternative medicine” and “pseudoscience” cures and health tips at the door when you see me. Just because you cannot see why I need a handicap pass DOES NOT MEAN that I do not need it and am faking a disability so that I can park in handicap. Yes I do need several days of exclusively staying in bed after spending a whole day using up a lot of energy. I am NOT being lazy because I need to recover for the next several days. Finally just because I’m happy, smiling, and laughing DOES NOT MEAN I feel well and am “healthy” or “cured”. 

I wrote this because the holidays are coming up and I’m going to be seeing my relatives who often see my good mood as a sign that I’m no longer sick. Or, that since I’m wearing makeup and I’m dressed up and smiling I must be cured. It sounds terrible but sometimes when I’m with people who I know feel that way or think that way, I will act more sick or walk a bit more clumsy just so they won’t think I’m better and they will keep treating me the way I need to be treated. It’s just really complicated. I wish I could send people this rant when they treat me like I’m cured but I don’t want to hurt them because I know they just don’t understand. I hope other people can relate to this too.

Comments

Post a Comment

Popular posts from this blog

Taking Care of Yourself During the holidays (or big events): post #4 (co-written)

Welcome to the holiday season, from Co-writers @health_and_unwellness and @chronically.undiagnosed92 . It’s a time that should fill people with joy, but when you already have to cope with the day to day effort of living with chronic illness, even when things are going well, and the holidays roll around it can feel overwhelming. You may feel that you’re already pushing yourself to your limits, and now many of us will find ourselves responsible for arranging elaborate gatherings and celebrations. I, for one feel a little intimidated. For me the holidays mean a massive build up of many things, and unfortunately, stress is a major one of those things.  In Australia, our main holiday celebrated is Christmas Day. And for me that’s one day where I’ve become responsible for arranging the gathering of my family. For me that means, that there is a large Christmas tree to be assembled and decorated, masses of different foods to be prepared and served at the table that needs to be set up an
Read more

Let’s talk about pain: post #3

This post is dedicate to everybody who helped me survive this pain, I love you all! Most people don't talk about pain. Its seen as weakness, or a personal fault. When you have a chronic illness pain is normal, and we talk about extreme symptoms with a very casual tone. Able-bodied people don't always know how to respond, and that makes it more difficult to talk about. As difficult as it was to write this (mentally or physically), I'm doing this to spread awareness of just how hard a life with chronic pain can be. I’ve had chronic illness symptoms as early as middle school. By the time I was in high school, I had daily symptoms than only got worse as I grew older. The chronic nausea, headaches, aches, nerve pain, and unrelenting fatigue were all normal, so I never mentioned it. In middle and high school I seemed to injure easily. I sprained my ankle multiple times in middle school, had issues with ribs coming out of place, and broke my foot in 3 places in high school ju
Read more

My story: post #1

Hello everybody, I am here to represent an intersection of a few Minorities . I am a Non-White , Transgender , Queer , Disabled Young Adult . I have had C hronic Illness ,  Fibromyalgia , for most of my life and thought that my frequent Symptoms of Pain , Fatigue , and Stomach Issues were normal. I have always been independent, living alone since I was Sixteen Years Old . I was studying in four different countries. Even with my Chronic Illness . I was able to pursue my many Academic and many Extracurricular interests, as well as socialize frequently. When I arrived to Los Angeles to finally get to rigorous studies of math and physics, a few problems arose. I experienced an Extreme Dislike towards my Body and Social Discomfort around being Perceived as Feminine . I began to Medically Transition and proudly claimed my title as a Trans Man . The other problem was an extreme increase in my Symptoms . So much so, I was losing the ability to take care of myself and perf
Read more