So I just started back in Grad school. At this point, I feel like an old pro. I have my classes managed (for the most part) and I’m working hard to remove my “stink face” from my 4:30-7:00 p.m. class repertoire. I must do this after a very sweet and helpful-meaning professor cornered me after school last year and asked me why I was expressing such disdain and general hatred for her class.
“I can just tell by your face that you think you’re above this course, G.”
Whoops. Honestly though, the fact that I’ve been working 10 hours straight in the most hectic business market in the world, the classroom, isn’t the reason why I maintain a stink face deep into the evening hours. I’ve never hated a class in my life; that’s simply just the way my face looks. (Well, maybe I was a little bored that day.) Nonetheless, point taken, I’ll be aware of it.
Anyway, I’ve been trying to stay even-keeled these days. I know I have to get over the fact that although I work twelve hours a day serving America’s youth, I still have to complete fifteen hours of post-regular business day volunteer work for one of my classes. It will make me more culturally-aware, and I will certainly get some joy out of it- so no big deal. I’ve also been working hard to be honest with myself about how many extra jobs I can do around my school without totally burning out. Now, don’t get me wrong; I love to volunteer, I love clubs and after school activities, and I love money (I get paid extra to do some jobs so heyo). It’s not that I don’t want to get down and dirty.
However, with the onset of some of the most debilitating panic attacks I have had in recent years, and the blossoming allergy/common cold symptoms I have stumbled upon in the last week (which could be nothing or a serious lung infection often associated with my MCTD), I have to revert to my sick-self ways. Ugh.
I ask myself: “G., sweet little overachieving G., do you maybe think you’re doing too much?”
Instead of the usual “Shut up, B!” that my mind normally reverts to, right now I’m in an odd state of legitimately thinking I can handle what I’m doing. Delusions? Adulthood responsibilities accepted?
Through these emerging issues, and the questions they bring up for my schedule and mental load, I’ve been thinking a lot about the limitations we put on ourselves as people, particularly the limitations that we, and ultimately society, put on those of us who have chronic illnesses.
Anyone who is chronically ill knows that we often have to measure our lives in spoons (1), a concept that is confusing to anyone who isn’t sick. Spoon saving due to a chronic illness means taking into account that since I went to the gym yesterday (2 spoons), and I had a stressful sixth period today (3 more spoons used up), I don’t know if I have the energy to grab a beer with my friends tonight. I only have so many spoons to give out before I flare. Which is not fun for anyone.
I think that a lot of my feelings on the topic of limitations and the oftentimes frustrating sympathy that results from those who are akin to my limitations, are spawning from a book I’ve been reading: Laurie Edwards’ “In the Kingdom of the Sick” (2).
In my opinion, some of it is a little wordy and repetitive, and not suitable for a mild hypochondriac like me. I read some of the case studies and think to myself:
“I KNEW IT ALL ALONG!! I HAVE xhoiaskldnfiowheawermonia disease too!”
Besides that, which is entirely a result of my fear and not Edwards’ writing, it’s given me a lot of great food for thought.
The main premise of her book is that people, particularly women, are socially stigmatized for being sick. Edwards states “The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better” (2). In essence, women, who must always remain healthy and vibrant according to society’s standards, are somehow lacking or inadequate if they appear to or define themselves as sick.
As someone who constantly heard and still hears slews of:
“It’s just a cold, it will get better”
“You do too much, just take a break once in a while and you won’t feel so bad.”
“Don’t be so sedentary; if you just go for a little walk or bike ride every day your muscles won’t hurt so much.”
I find this stigma to be spot-on, and entirely accepted; unbeknownst to even the most intelligent and well-meaning humans.
With that said, of course I adore my friends and family who say these things with a concerned and hopeful smile. I know everyone wants what is best for me, and if I don’t say it often enough, thank you, I love you.
Nonetheless, through these comments, which ultimately reflect a deeper-seeded societal issue, I am faced with an understanding of the reality of the stigma. I am subtly caressed, daily, with a hand that feels like sandpaper, by the way these ideologies makes those of us who are chronically ill feel like we’re making it up, or at the root of it, making ourselves sick.
Isn’t that exactly what you’re telling me when you ask me to deep breathe my anxiety away or go to yoga so that my extremities don’t burn or atrophy during a MCTD flare? Yes, you are trying to provide realistic, and sympathetic ideas because you love me, and you don’t want me to hurt anymore. But the way it feels to a sufferer, and the greater reality of it all is that by insinuating that a chronic illness can be exercised, laughed, or willed away, we bypass the chemical and physiological fact that I have auto-antibodies (3) floating around me that viciously attack my own healthy cells, falsely thinking they are intruders.
The result of constantly being made to feel like I am the problem, and not my autoimmune disorder leads me, and many other people, to cry and mourn the loss of our healthy-selves in silence. We are no longer allowed admission into “The Kingdom of the Healthy”. Edwards could not have put it more eloquently when she wrote, “So many people are suffering in isolation because they don’t want people to think they are crazy” (2). That is exactly my feeling, and the reason why I don’t tell anyone, save my therapist and doctors, that I’m scared of myself and what’s going on inside my body.
Nothing makes the fact that you have a chronic illness, which you cannot control, and which you did not invite into your body, worse, than having it trivialized and demoted to insanity. The saddest part of it all is that we don’t even realize we’re doing it, myself included. It is so ingrained in our capitalistic mentalities to believe that winners don’t get sick, and that if you actually worked really hard at it, no excuses, you could pull yourselves up from your bootstraps and beat anything; cancer, PTSD, ADHD, or a heart attack.
But here I am, looking at it. Number 14.06. on the Disability Evaluation Under Social Security (4). I am disabled, and if I want to, I could begin collecting checks for it and/or get a sticker for my car that gives me prime parking at the mall. One day, it will more than likely come to this.
Nonetheless, the issue will remain, when I, a seemingly healthy woman of 24 emerges from her car, taking a handicap spot from someone who “really needs it”. My illness is quiet; many don’t know because I am blessed with mild symptoms and a support team that has given me medications and functional ways to deal with whatever comes up.
IfI did “look sick” (whatever that means), people would inevitably treat me differently because of my deviation from the norm (healthy), which is also not awesome. In the end, I still grapple, as I’m sure many people with chronic illnesses do, with the need to have my sickness identified and supported, while also trying to fit into the image of what society says a woman, athlete, or teacher should be.
I don’t know ultimately, what we, the chronically ill, want from what Edwards deems as those who “live in the Kingdom of the Healthy” (2). I don’t want people to stop caring about me, and stop giving me love and advice on how to feel better. Sometimes they think of something that I’ve never tried and it works (i.e. acupuncture).
At the end of the day, I think it boils down to recognition. It’s not that I want applause for my silent struggle. I didn’t do anything to merit the title of “Good at Being Chronically Ill”.
What would be ideal for me, and I will assume others, is more empathy and less sympathy. Everyone knows what it means to hurt, to be sick. Tell me what chronic problem you encounter daily, not just about a particular instance of a time when you felt sour. Comparing single, ephemeral incidences of hurt to a chronic illness is pure torture, because the fact remains that your sour day ended and mine may not due to the eternal nature of my problem. Explain to me what your doctor said that gave you hope. Take me to my rheumatologist when I’m having a flare and I can’t drive my car. Imagine yourself as your drive all the way there, living in your worst moment, vulnerable, embarrassed, needing just a little more support than usual.
It boils down to love, and the realization that we’ve all been dealt something difficult in life. No one person’s load is more to bear than another’s; it’s all perspective. If we love more and compare less, empathize more, and sympathize less, everyone wins. This type of winning is what emerges from hard work, and the understanding that today, you are fine, but tomorrow you could enter into any one of the other kingdoms, and you’ll probably want a hand to hold.