Tag Archive | Cancer

I Am Not Your Inspiration: The Problem With Inspiration Porn

Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young

The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.

If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy to be helpful whenever possible, but I don’t want ableist individuals thinking that my refusal to cry in a corner every day makes me somehow better at being sick than someone who can’t stop sobbing and wishing for death. I am not any better.

I am not “trying harder” than anyone else and I will not be used to shame someone who feels like they can’t handle their condition. I still feel like I can’t handle being chronically ill on a regular basis.

I am not your feel-good story. I am a deeply flawed human being with constant, unrelenting chronic pain and many other debilitating conditions and symptoms, too. My choices are give up and die, or keep trying to find a reason to wake up and to put food in my mouth once a day. Sometimes that is a genuine struggle. Sometimes I do not get out of bed, and I do not put food in my body, and that does not make me pathetic or weak, it makes me sick. I have good days and bad days and I have given myself permission to have both.

I am so very tired of inspiration porn, aimed at the general public and unapologetically using those who are physically disabled, suffer chronic pain, or live with mental illness and/or neurodivergence. Inspiration porn wants you to say “well, it could be worse, I could be that poor person in a wheelchair or that teenager with a cane, therefore I’m not allowed to feel shitty, ever.”

Bull. Shit.

I am happy to answer any and all genuine questions about my life, my coping strategy, my illnesses, or anything else that someone is interested in, provided that the person asking is not just going to use my answers against me later. I am not interested in answering questions that are actually just thinly-veiled judgemental commentary on how I deal with my pain and other symptoms. I wish that my abled friends could just acknowledge that my reality is not something you can comprehend if you don’t live every second of every day in pain, knowing that the pain is life-long or progressive.

If you are not sick in a long-term sense, please try to understand why you cannot compare my life-altering, completely debilitating daily pain to the last time you had the flu, or the time you broke your arm, or even the car accident you were in, unless one of those things resulted in a long-term illness, disability, or chronic pain disorder. Flus, broken bones, and car accidents may be unpleasant, but after some healing your life resumed as planned, so you have no idea what it is like to live in my body, the body that has caused me to slowly, against my will, forget all my dreams and plans for the future. Please realize that every pain is experienced differently and is unique to each individual who is suffering. Comparison of one disabled person to another person, disabled or not, is never okay. We are not brave for the things healthy people think we are brave for. We are not brave for simply existing, we are not brave for going about our day as normally as we possibly can. Attitude does not differentiate a “good” cripple from a “bad” cripple. Inspiration porn is pure victim blaming, and society has unfortunately picked up this nasty habit.

Ableist propaganda would have us think that if we are not using our illness to transform ourselves into an inspiration, we are just wasting space and burdening those around us. Do not buy into that trash! I am sorry for each and every person who has ever felt like their pain or illness is the punchline to an ableist joke. Those of us who are ill are allowed to make jokes, we are allowed to seek out the humor in our situation, and it is despicable that people would use that coping mechanism against us. Yes, I use sarcasm to cope. Yes, I use humor to cope. No, that does not mean I’m cured or experiencing less pain or “getting better at dealing with it” as so many have said to me. It means that if I don’t laugh about this, it will crush me.

My medical decisions are not up for discussion unless you are another spoonie, and even then, I retain the freedom to completely ignore any and all medical advice that doesn’t come from my doctors. I even retain the right to ignore medical advice from doctors that does not make sense or goes against my beliefs.

I certainly won’t be basing my medical decisions off of an abled friend’s (ex-friend’s) suggestion because they feel like they have “observed my pain” (read: been annoyed by how much I talk about it) for long enough that they are unreasonably comfortable making sweeping declarations about my use of medication, or with stating that I “pity myself” (read: retreat from overwhelming and triggering situations so I can take care of myself appropriately) sometimes. Fuck yeah, I do pity myself sometimes. I refuse to apologize for that.

The abled seem to possess an unlimited capacity to confuse my online and in-person honesty and unwillingness to sugar-coat reality with what they view as pity-seeking behavior and weakness. Saying I have an incurable illness is not pitying myself, it is the truth. I am allowed to speak the truth, my truth, and I am allowed to remark at the depressing reality of chronic pain. Ableism makes accepting the reality of our illness that much more difficult. If I said I never have moments of self-pity I would be lying, and that helps no one. I have every right to be upset about my conditions and to grieve over the losses in my life as a result. And so do other spoonies at any point in their journey.

It is just grotesque that there are people self-righteously using those of us struggling with mental illness, cancer, or chronic invisible illness (to name a few) as their motivation, or to shame others with similar struggles. I don’t want my accomplishments to ever be used to make someone feel inadequate.

The myths that are perpetuated by inspiration porn make it harder to be honest about what we as spoonies experience, which is why it’s time to start calling ableism out wherever and whenever we see it. Just because one person with MS can work a full time job does not mean that another MS patient is faking their inability to work. It’s such a simple thing, to validate someone, yet we don’t do it enough.

You wouldn’t worry about being polite when calling out racism or homophobia, so why would you worry about offending people when you call out their discriminatory attitudes towards chronic illness, disability, neurodivergence, mental illness, and chronic pain?

Enough

So many people I love and care about deeply are going through the toughest (I hope) times of their lives right now. To all you warriors out there who aren’t sure what the future holds, try to take it easy on yourself. You haven’t given up. You are trying your hardest. You are surviving. That’s enough, no matter what anyone else says. ❤

Chronic Pain Awareness Month

Chronic Pain Awareness Month

September is Chronic Pain Awareness Month

I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the real bravery of the men and women who wake up each and every morning in unending, unforgiving pain. In addition, I desire so much to ease the transition for newly diagnosed patients with chronic illness through education, advocacy, and compassion. As a community of chronic pain patients one of the most pressing issues is to get a realistic, non-romanticized version out to the public of what it is like to be ill and not be able to rely on your body, or even you brain, depending on the day.

I am the same person I was before my illnesses took hold, but I am also different. I speak differently, and I speak about different things. I spend most of my day distracted by pain, and looking for a distraction from it. I am sure that the people around me no longer believe all the crazy things that are happening within my body can possibly be happening to one person, all in one month, and that is part of the stigma of chronic illness. I too didn’t understand what it meant to look fine on the outside but deal with so many problems within your body that even basic work was impossible. Five years ago, I would have pointed at someone like me and said “oh, she’s exaggerating, it can’t really be that much worse than my _____ (insert: back pain, flu, headaches, anxiety, arthritis, whiplash injury) and I worked though all of those things” but I was wrong. I was so terribly wrong that I guess life had to prove it to me in a pretty brutal way. How does that saying go? Judge not, less ye be judged?

I figured, especially because I was one of the judgmental voices, the harsh and unforgiving “them” who could never understand chronic illness, and now I understand all too well, maybe I should be one of the ones who helps shed some light on the many unseen and unspoken hurdles facing patients with a myriad of rare, invisible, incurable, and terminal illnesses. I’m honestly guilty of still trying to hold myself to standards that I cannot achieve with my illness in full force like it currently is. Hopefully in the midst of promoting acceptance and support from caregivers, relatives, friends, significant others, healthcare professionals, and the media, I can also sway some fellow spoonies to take it a little easier on themselves too. If you are dealing with daily pain that will not relent, try to gently remind yourself that you won’t gain any ground by ignoring your symptoms.

The road to being okay with your new life as someone living with chronic pain is paved with research, acceptance and acknowledgment of your symptoms. For those of you who are not in chronic pain, likewise, researching your loved one’s disease, then verbally showing acceptance and acknowledgment is the best gift you can give someone who is suffering. It is amazing what hearing the words “I believe you” can do for the soul. It is like being wrapped in a big soft blanket and having a hot cup of cocoa placed in your hands on a cold day.

Never forget that you own the right to tell your story as raw and honest as you feel comfortable with. You aren’t just doing yourself a favor by getting it out of your head and into writing, you are promoting awareness by removing the myth from your illness. Your pain may be invisible, but that does not make it any less real, any less scary, or any less debilitating than a visible injury. We spoonies all have a lot of people to prove wrong, from the 1/4 of primary care physicians who believe most of their chronic pain patients are faking, to emergency rooms that are ill-equipped to deal with chronic conditions, to unsupportive families who refuse to do their research, and of course general stigmas against pain patients that have existed for ages. These are all barriers to effective research, communication, and seeking out treatment. But they are obstacles that we as a group can overcome.

Raise your voices, tell your triumphs and your horror stories alike, others need to see what we go through on a daily basis and speaking out helps to break down those barriers and create road maps for understanding the whole of chronic illness, not just the symptoms, but the underlying causes and the body-wide effects created by living a life in constant pain. I know it is difficult, but only when we are not afraid to share what we are going through will we transform the silent suffering of people with invisible illnesses and chronic pain into a growing understanding that we too deserve to be treated with the dignity, respect and even admiration for what we deal with on a daily basis. It’s not just an idea, it’s a necessary change and we have the numbers, the intelligence, and the determination to make it happen.

Click on the thumbnail below to go to the larger version of my painting for Chronic Pain Awareness:

Chronic Pain Awareness Month

Chronic Pain Never Quits, let’s give the huge number of people worldwide suffering with chronic pain conditions some hope! There are many misconceptions about people with chronic pain, and these can easily become stigmatization that negatively impacts those who already suffer enough going through the daily horror of chronic pain.

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chiaricontinues

chiariwife. chronic pain. awarness.

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