If I played a game of Bingo with every phrase or sentence I have ever heard from anybody new I come across who asks about my illnesses, I would probably cut out the “you must think positively” first, because I have heard it so often.
Yes, I know people are trying to give us advice they think will help, but it comes off as very patronizing. I am sick, I will probably always be sick, I have the right to sulk or mope about it once in a while, to complain about it or talk about it if expressing myself that way is what helps me. I’m a venter, I feel much better after venting and I don’t hide my illnesses from people because I am not ashamed of something I can’t help or change. On the contrary, talking about it is therapeutic to me but also increases awareness for chronic pain and illnesses to others who might not have been as receptive or appreciative of it.
Someone I know recently told my mother that if I stop thinking so negatively (i.e. saying I will never get better, which I never say as a lament, but rather as a fact), then I will probably be better. She said that my illness gets worse because of how negatively I think. Assuming that my emotions have anything to do with the degree or intensity of my illness is patronizing and trivializing it. No, my pain and other symptoms are not affected by my emotions. They are there when I’m happy, they are there when I’m sad, when I’m working, when I’m resting, when I’m sleeping. The fact that you think that simply thinking positively and deluding myself that I will get better someday (excluding the possibility of a miracle) does me more harm than good. I’d rather be rooted in a reality that’s unpleasant than live in a dreamland with irrational hope.
I was very offended by this person because I appreciated that they let me vent to them and talk to them about it once in a while. I have never cried in front of them about it, merely talked about it when I needed to get it off my chest. The fact that they went behind my back to tell my mother that I make myself sicker by thinking negatively is very hurtful.
I am one of the most optimistic and ambitious people you will ever meet. I was told to go on a leave from med school for a year and threatened with compulsory leave if I didn’t do it myself, but I persevered and graduated with my class, even though it took countless ER trips and handfuls of medication to do it. I laugh and smile and joke with people every single day and I’m still the life of the party with friends. I go out even knowing I’ll regret it when I come back and have to suffer, but to me it’s worth it if I enjoy myself. During all this, not once did the intensity or degree of my symptoms decrease just because I was emotionally stable and ostensibly happy. They remained exactly the same as they do when I’m sad or upset. So please don’t say something as simple as positive thinking will help me. I am a positive thinker by nature, even with all my illnesses and inability to walk more than a few minutes even with a walking cane, I am looking for options to have a career and as normal a life as possible. If people don’t think that us sick people have tried every single thing you could possibly suggest (and then some), they need to get a reality check. We have done it all.
I am truly hurt that behind my back people would make it sound like I’m a whiner or complainer and that’s why I am sicker. I’ve even heard ridiculous things such as “oh the sodas you drink are why you are sick” or “your cats are why you’re sick” or “if you eat fruit, all your problems will go away” or “you should exercise or go swimming” (even after I tell them I do not have the physical capacity to do either of those things).
I had a clinical attachment set up, but I could go only a few days for very few hours because after a while, I can’t walk or feel my right lower limb and I am in too much pain to process what anyone is saying or doing. My eyes glaze over, my hands tremble. I don’t scream or cry usually (when I do, you know it’s ER time), I just get very quiet and develop what I call my “pain stare.” This same person who told me to my face it wasn’t worth going if I suffered this much had also said behind my back that I should’ve made the effort and gone because of how much trouble it was to get the attachment. Why can people not understand that willpower has nothing to do with my actual physical capacity of functioning? It’s just not physically possible.
I have even heard things such as “you just need to somehow make it through your internship, steel yourself for it and say to yourself ‘I will do it’ and just do it.” This means you think I am holding back and doing less than I could or that I am lazy. On the contrary, I go way past my actual physical capacity every single day and suffer for it once the adrenaline and medication wear off. I am still trying to find a way to salvage my career every way that I can. No one has more willpower than me, not once did I give up and say “maybe I can never have a career,” not a single time. If I can do it, I will do it. If I’m not doing it, it means I am physically incapable of it. It has nothing to do with not trying hard enough. If I tried any harder than I already do, I would break apart.
Please, friends and family of chronically ill people, think over your words carefully before you say them. We are people who may be sensitive to words because we are insecure over our own illnesses and feel guilty for being sick even though we have no control over it and statements such as these just make the guilt worse because it feels like we are being told (no matter how nicely) that we have control over our bodies and are just choosing not to avail of them.