I deal with 14 invisible illnesses every day. If you saw me on the street, I wouldn’t look sick. I wouldn’t look disabled. My illnesses are internal. Because of this, I often deal with the fear that I won’t be believed when I call in sick to work or cancel plans. In my past, there was a myriad of situations where I was made out to be exaggerating or lying. I once had a mentor say to me: “It’s not that I don’t trust you, it’s just that I don’t believe you anymore.” There were a couple times I was admitted to the psych ward for suicidal thoughts/ attempts, and either my support group or even DOCTORS would doubt my suicide attempts as being real. As a result, I tend to overexplain everything (often to the annoyance of whoever I’m talking to). I sweat the little things and feel like I have to defend everything that comes out of my mouth as truth.
So when it comes to my illnesses, the same fears apply. Mentally I struggle. I’m either manic or depressed because of my bipolar. My emotions are four times as strong because of my borderline. I’m obsessed with the fear of harm coming to myself or others (OCD). I worry about everything (anxiety). I avoid and restrict what I ear (eating disorders). I live in a near chronic state of feeling traumatized (PTSD). My head is always spinning. My stomach is paralyzed, so I’m on a strict diet and am currently malnourished (despite being ~200 lbs, so I don’t look like it). This basically makes me feel like I’ve come down with a bad case of the flu 24/7. I suffer from chronic pain in many places, sensory processing issues, cysts on my ovaries and pre-diabetes. With these things and everything else I have going on, there is never a day that I feel like healthy. It is almost impossible for me to participate in everyday life activities. When I work a 3-hour shift (the maximum amount I can work per day as determined by doctors), it feels like I worked a 9-hour shift (which I used to do before I got sick). I can barely get out of bed for the rest of the day. Laundry is a daunting task that I usually have to span over multiple days by washing on one day, drying on another day, folding and putting away over the next few days. I’m lucky if I can shower once a week. The pain builds when I cook food to the point where I’m in too much pain to eat what I cooked, and have to stick it in the fridge for later. Same goes for grocery shopping. I usually do it late at night so I can sleep off the pain after completing the task. I’m sick, and it rules my life.
I do my best to live life to the fullest despite being sick. I carefully plan out my week so I have at least 2 days a week where I don’t have any commitments, so I can lay in bed all day and recuperate. I’ll watch TV, write stuff on my laptop, play video games or read a book. I light a candle, use baby wipes to keep myself clean and drink lots of water. I know that if I work, I won’t be able to do anything for the rest of the day. I try to plan fun activities, like board games with friends, after a doctor appointment that might be difficult. I call friends and talk to them on my days I’m stuck in bed. I do my best to be happy.
Even with all of this, I still struggle with the fear of not being believed. I loathe calling in sick at work, in part because I love my job and hate missing it, but also because I’m scared my coworkers won’t understand. Recently all three managers were sick with chills, fever, cough, etc. but they all still came into work. I felt especially useless calling into work sick during that time. I felt like a wimp because they were toughing out their sickness for work, while I wasn’t. Images flashed through my head of them complaining about me being weak. It was a challenge for me to remind myself that their sickness was different than my sickness.
Living with any illness, visible or not, temporary or chronic, is a challenge. The flu is a marathon. Chronic illness is like eternal back-to-back marathons. Not having anything visible to identify to strangers that I’m sick is a struggle that I deal with every day. I’m constantly trying to prove to my coworkers that I’m sick (even though they are lovely and don’t actually need proof). Having a medical ID bracelet is helpful for me beyond just the practical use for first responders. It helps me feel validated, and it’s visible proof that I’m sick. I feel validated when I look at it. I deal with invisible illness every day, and I learn something new every day. It’s a challenge, but it’s my challenge.
Ungluing Stigma 