“Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase

~ Camilla Laurentine

(Update 1/6/16: As of today, this post has been read almost 80 thousand times.  It was originally written for the Pagan and Polytheist communities and those who regularly read my blog, but very clearly it struck a chord with a lot of people.  I’m actually still pretty shocked by that.  I have made the decision to move any more writing on disability to a new blog, Wunderkammer by C. Laurentine, which will document living life as a disabled artist and activist.  So if after reading this you decide to follow me for my writing on disability, it will be over at the new blog.  Thank you.  Thank you a million times over for reading this.  Thank you. – Camilla)

A friend posts an article on Facebook about how the United States’ medical system does not meet the needs of those with chronic pain. This is a reality that I have experienced. This is a reality that I regularly speak to others who experience chronic pain have also experienced. About a month ago when I was at the doctor’s office for my annual exam, I overheard 2 medical workers talking about how they hate when patients say they’re in pain, because they know they’re over-reacting. I was horrified, but it wasn’t the first time I’d heard someone in the medical field say something like this.

When we talk about chronic pain, and disability in general, inevitably someone pops up to say something like the following:

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach. Putting our faith completely in the medical system is futile because at the end of the day Big Pharma (which sponsors the medical industry) is a for profit business and there will always be conflicts of interests. Many people are unaware of the fact that a lot of these illnesses stem from emotional issues that have not been dealt with. And when unresolved, it is these emotional issues that eventually manifest physically as pain or illness in the body. Doing some actual shadow work, to confront these issues and release them- along with meditation, Yoga, the right nutrition, etc.- can improve and in some cases even eliminate these illnesses completely.

This is an actual response to my friend’s post about chronic pain. I’m being kind and not putting names up. Some of you out there might be nodding your head to what is being quoted here right now. I am not exaggerating when I say that this was the second time in the same day I’d seen these sentiments said by 2 different people, and I’d not spent much time on social media yesterday. Being active in the chronic illness and disability communities, I see these statements on a daily basis.  I see the effects on those who it’s said to that don’t live their lives out in the public.

I expressed in a frustrated moment on Facebook that when I hear the words “Big Pharma” I stop listening, because I assume it’s going to be filled with a bunch of unscientific nonsense. And that got challenged, because obviously I’m making assumptions that aren’t nice. Yet I encounter the same situation day in and day out, and I have many friends with chronic illness and invisible disabilities who also express this same sort of experience happening to them regularly.

So let me take a big deep breath here as I calmly say this: I am sick of being nice about this shit, and I’m horrified that those fighting in the social justice realm are constantly ignoring what disabled people are telling them about their experiences.

As a community, we’ve risen to the occasion (somewhat) appropriately, trying to confront race, sexual orientation, and gender in social justice, even though I realize it’s not enough. We fall behind a little more in discussions on class, but we also have a very epic conversation going on about capitalism currently. But over and over and over again I see people fall short on the conversation about social justice for the disabled down to the point where able people regularly tell us we’re taking care of ourselves incorrectly or not doing everything imaginable to treat ourselves.

So, allow me to begin with why the above quotation is a big old line of shaming BS line-by-line. (Please do your best to remember that this is a disabled person telling you about her experience, and don’t come back with a “not all people” statement. Because derailing.)

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach.

Stop and ask yourself three questions here… Do I suffer from chronic pain, which would allow me to actually be speaking from a place of experience? If so, did it help? If yes to both of these things, great! I’m genuinely happy for you, but please remember that everyone’s body is different (never mind diseases vary from person-to-person) and may not respond in the same way. But try not to use sweeping generalizations and talk from a place of your own experience.

If the answer to the first question is no, then stop talking. Just stop. As a white person, I wouldn’t try to tell a person of color what racism was about. As a cis-gender person, I wouldn’t tell a trans person how I think they should navigate their lives. Disability and chronic illness is no different. If you don’t experience, stop, listen, and learn. Your place is as an ally if you choose to be one, which means you need to stop and realize that you do not experience what a disabled person is talking about.  I hope you never do.

Putting our faith completely in the medical system is futile because at the end of the day Big Pharma (which sponsors the medical industry) is a for profit business and there will always be conflicts of interests.

Okay, so here is where I’m going to get into why as an ally, I really wish you’d stop using the term “Big Pharma…”

First of all, I want to show you what my medicine box looks like as a person with Ehlers-Danlos Syndrome Hypermobility Type, Idiopathic Intracranial Hypertension, 3 types of migraines, tension headaches, Hyperandergenic Postural Orthostatic Tachycardia Syndrome, Dysautonomia, severe environmental and food allergies, probable celiac (a comedy of errors cut out the gluten before I could get tested properly, and I’m unable to challenge because my reaction is documented as very severe), an immune deficiency, and Mast Cell Activation Syndrome. Add to that social anxiety disorder and panic attacks, because my body thinks everything is a threat to its life. Add onto a couple more suspected illnesses that I just don’t have the energy at this point to get tested for, because I spend at least one day a week in a doctors’ office. Add to that a few other things I’m just too lazy to type out, because they’re common but fucking painful all the same.  And I am one of the mildly afflicted EDS cases out there, which the Ehlers-Danlos is to blame for all the rest.

A white box filed with 20 different pill bottles and boxes

Hopefully you notice I take a mixture of prescription medication, over-the-counter medication, and supplements (Valerian, garlic, vitamin D, and vitamin C for starters, but my tea cabinet is rather epic since I am a bit of an herbalist).  None of this is making me sick, though it’s taken me over a year after diagnosis to balance it properly, and it has to be adjusted every few months.

Secondly, here is the fist full of pills I take every night before bed on a good night. On a bad night, it’s more.

A hand holding 10 different pills

Those of us with disabilities who are on medication regularly depend on “Big Pharma” to stay alive. The reason I wish people would just stop throwing the phrase around is that they are only looking into a fraction of what’s wrong with the medical system when they talk about it. And even if they’re not about to spout off some unsolicited advice or some shame to any disabled person happening upon them, they are in a minority of those who don’t use the phrase to shame people for doing what it takes to survive. And it is one of the disability world’s derailing “not all (insert majority)” statements if you try to argue that not all people talking about “Big Pharma” do these things.  The vast majority do, and I’m not the only disabled person out there saying this.

Do I think the pharmaceutical industry is corrupt? You bet I do. You know what else is corrupt that you’re not talking about when you say “Big Pharma?” The state governments in places refusing to reform medicaid so that poor adults are still going without medical insurance. I had a friend break her foot recently who didn’t want to have to go to the ER, because it was too expensive and she had no health insurance. The fact that medical insurance is so damned expensive that, before Obamacare, I could not afford to pay for it, I couldn’t afford to get diagnosed to prove I was disabled, and I went years suffering with absolutely no treatment at all while going into extreme debt every time I had a medical emergency, which with my diseases happens pretty often.

That ignores the fact that the entire medical system is an industry, meaning it’s meant to make money.  It is broken.  The entire thing is broken.

I am not saying that the pharmaceutical companies in America aren’t corrupt. I have a disease 1 in 100,000 people get. There is no approved treatment. There is no cure. I will never in my lifetime see either of these things, because it’s a rare disease that won’t make money for the pharmaceutical company if they spent tons developing it. Trust me, I have a very vested interest health and medical reform.

But I depend on medication to live and function in a relatively normal manner (most days). I take a diuretic to keep my brain from being crushed by my cerebral spinal fluid. I take a beta blocker to keep my heart from going into tachycardia just because I sat up or, Gods help me, stood up instead of laying flat on my back constantly, but also to make sure that my aorta doesn’t get any bigger than it already is by keeping my blood pressure down. If it does, I run the risk of it dissecting from my heart. I take an old school antidepressant to try to prevent a constant headache instead of just wanting to die from horrific head pain and various other symptoms any time a storm comes through.

And so, even if you aren’t about to spout off how I’m not taking care of myself in the way you feel I should be when you say Big Pharma, you are 1 in probably 60 people I encounter in a given month not using this term to lay some shame on me not working hard enough to not be sick.

You’re hyper-focusing on one part of a much larger problem when you use the term “Big Pharma,” and to put it bluntly, you’re using a term that is steeped in ableism the vast majority of the time. Which, my allies in social justice for the disabled, I know you’re not intending to do. So please, listen to those of us in the actual fight, and as an ally please stop talking about “Big Pharma.” It’s a buzzword that needs to go.

Many people are unaware of the fact that a lot of these illnesses stem from emotional issues that have not been dealt with. And when unresolved, it is these emotional issues that eventually manifest physically as pain or illness in the body.

First of all, again, this is blaming the chronically ill. Obviously we are just not willing to deal with our emotional problems, and if we did we would no longer be sick or in pain. We’re not even aware of the fact that we could be without pain…

Let me lay down some more anger and swearing here. (And YES, I have a RIGHT to be FUCKING PISSED OFF ABOUT THIS BULLSHIT. It’s ableism! It’s privilege and blaming the victim!)

I don’t know a single chronically ill person out there that doesn’t fucking know that emotions play into how they’re feeling physically. I have a disease that is literally triggered by stress or whatever my body perceives as stress, and I fear the day it becomes the disease that’s the next health nuts latch onto as the source of everyone’s problems like gluten currently is and everyone decides (again) that I’m a hypochondriac (which in the wrong situation could kill me). I don’t know a single chronically ill person that doesn’t know that there are people out there that 1) are so steeped in their privilege that they don’t realize they have absolutely no idea what it’s like to be in chronic pain, and 2) have all the answers and yet aren’t a medical professional of any kind.

Not only are you singing your able-bodied privilege here, but you’re coming off as a total dick.

Trust me, I’ve been in therapy for 20 years. My therapist regularly tells me that I’m the most well-adjusted chronically ill person she knows. All of my mental health issues have been proven through testing to be due to physical causes – Those being anxiety, panic attacks, and PTSD.  My celiac disease looked like bipolar disorder, but I hate mentioning that because I don’t want people to latch onto the fact that I’m in a minority of people who actually had something fixed by dietary changes and apply it to every other bipolar person out there.

Not everyone handles this stuff like me, though. That’s perfectly okay. Some chronically ill people have developed emotional problems because they are constantly being told there is nothing wrong with them. Some chronically ill people do have mental health issues, because they’ve gone years upon years without a diagnosis or being diagnosed incorrectly.

I have been at this so long and have heard it’s all in my head so many times from friends, strangers, doctors, and loved ones that, despite having a ridiculously long list of diagnosis and more specialists than I care to admit to, I still sometimes genuinely worry that I’m a hypochondriac.  Or worse, maybe I’m suffering from what used to be called Munchhausen’s…  Maybe I just want attention.  The worst part of this phenomena?  I’m not the only chronically ill person who struggles with this.

I have PTSD, because I spent decades in the medical system with doctors telling me I was a drug seeker, a hypochondriac, mentally ill, and (my favorite) lacking in a strong spiritual foundation. Which, if you really want to get down to it isn’t just ableist, but it’s sexist. Think of the Victorian woman diagnosed with hysteria. We’ve really just changed the name to hypochondriac. Women are more likely to get this label slapped on them, after all. Point in case: It took me decades to get a diagnosis; it took my husband 2 weeks to get the same diagnosis.

I could rant on this forever. Just understand this: We know. You are not more informed than the chronically ill people you are shaming. Some of us regularly have to deal with the fact that we know more than our own doctors about the diseases we have. Your skimming of WebMD and Natural Health News does not make you an expert.

Doing some actual shadow work, to confront these issues and release them- along with meditation, Yoga, the right nutrition, etc.- can improve and in some cases even eliminate these illnesses completely.

Might I suggest doing some actual shadow work to the person who said this, because what you just laid out was a giant heap of privileged bullshit. You may want to dig deep and examine why you feel so enlightened on other people’s lives that you have the right to judge what they are doing, holding it up to your personal standards of health.

When I say I’ve been on this path for 20 years, don’t you think that maybe I’ve done some actual shadow work? Because when you say “doing some actual shadow work,” what I hear is “You’ve been fucking around on your spiritual path, and if you would just buckle down and do the work…” This is steeped in puritanical judgment and is saying “If you don’t work hard enough, it’s your own fault you are sick.”

You may be well-meaning, but this is, once again, putting the blame on the victim. It is saying that they are not working hard enough to fix their suffering. Period. End of story.

I need to break this down more, though, so you hopefully examine it…

I will be the first to say that, in my own life, meditation helps me. I have been doing it since childhood, and I do it even when I hate it. Offering, prayer, and meditation are the first 3 things I suggest to someone wishing to embark on a spiritual path. If meditation was going to fix my disease, don’t you think it would have by now?

Secondly, you have no idea what a person’s body is doing, so you need to stop suggesting things like yoga. Let me explain why… I have a connective tissue disorder. This makes me really, really flexible. Like freaky contortionist levels. I have had absolutely no training, but my joints are loose from the disease I have. If I did yoga, I run the risk of making my joints even looser, which puts me at higher risk of spontaneous dislocations than I’m already at. Now if I had a yoga instructor who 1) I could afford and 2) knew what Ehlers-Danlos was, maybe I could do yoga safely.

But the point here is you are not an expert in my body. I am. I am not just sitting around wishing I had a magical pill that made all the pain go away. Okay, actually I am, but reality tells me that’s not going to happen, because that magical pill would also be free of side effects. I would like my pain and suffering to go away with a single pill, and you know what? If you hurt like me? You would, too. But since that’s not going to happen, I deal with pain in the best manner for me.

Yoga, my friends, would actually make that worse, but since you’re not a medical expert you don’t know how to treat my condition. You don’t know what I’m doing. You’re laying a lot of judgment down, because for some reason people in the holistic health community believe that the chronically ill are just sitting around doing nothing for their own suffering and simply want a pill to take it all away, never caring about addiction, side effects, or any other thing.

Check. Your. Privilege. Your ableism is showing.

And finally, to me one of the most important things is this concept of “right diet.” What is right diet? Vegan? Paleo? Local? Gluten-free? Grain-free? What is right for you is not right for me. As someone with multiple food allergies, food intolerances, and more than one disease that requires a specialty diet, I am begging you to examine your opinions on food in general.

Do you think that, as a chronically ill person, I am completely incapable of knowing what makes sense for my body? That’s what I hear when you say “right diet.” You know, as opposed to what poor people eat, which makes them fat, lazy, and diseased… Or, wait, is it the poor person’s laziness that makes them fat which makes them diseased? I can never keep classist food arguments straight, because I’m too busy rolling my eyes back in my head and screaming internally at people not realizing what they are saying.

I’ve been to a nutritionist, because I’m genetically at high-risk for diabetes II. This isn’t some new disease in my family. My grandmother, who was stringently organic and health-focused, had it. My father has it. It’s just something I’m probably going to get at some point, though so far so good! And I do everything in my power to delay that. That includes making sure I exercise regularly, and I eat a pretty protein heavy diet because it makes me feel better than refined carbs. The nutritionist didn’t understand why I was there, because my diet is shockingly healthy.

I also am incredibly allergic to eggs. I have a documented gluten-intolerance that is likely undiagnosable celiac disease, because I can’t gluten-challenge but have the genetics and symptoms for it. I cannot eat melon or sweet peppers without becoming violently ill. And I have an anaphylatic reaction to anything with nutritional or brewers yeast in it. I live in a house with a wheat allergy, a millet allergy, citrus sensitivities, and either a mild dairy allergy or lactose intolerance. We have 2 adults who on top of all of that should be on a low-histamine diet, and when one of our stomachs slows down (because EDS can cause poor stomach motility among other things) we have to be mindful of that as well.

We also have to have a high-sodium diet for POTS, which includes drinking electrolytes to stay hydrated on top of drinking an ideal of 2-4 liters of water a day.

Since I’m on a diuretic, my diet has to be high in potassium. Since I have IIH/pseudotumor cerebri caused by EDS, I have to have a low vitamin A diet, because vitamin A increases CSF… You know what the health food movement taught me? That white potatoes are bad for you, and instead you should have sweet potatoes… Except for me it’s the exact opposite. If I eat a few sweet potato fries, I get a headache.

If I haven’t driven my point home with this, let me be concise: What you deem as the right diet is not going to be the right diet for everyone.

Did you realize that a lot of disabled people are poor? So when you decide they’re not eating the diet you would like them to be eating, that you assume is making them sick, you’re not only making an ableist judgment, but you’re making a classist judgement as well. Maybe they can’t afford to be eating 100% organic, local, grass-fed beef on a gluten-free coconut bun.

Yeah, poverty and chronic illness sucks.

Any time my fatigue is so bad I only have the energy to fix mac and cheese, I have to shell out $2-4 for that box of processed convenience food, since it has to be gluten-free. Or I have to drain my energy more by fixing something else, which could take me out for a couple days. Or drain my wallet more by ordering food, which is basically impossible to find something we can eat out that also delivers… And since I don’t drive to keep everyone around me safe, since I could randomly go blind or lose depth perception, I have to rely on an equally fatigued husband to drive and get food.

So when you see your chronically ill friend drinking that Ensure that you’ve decided is loaded with toxic/dirty/wrong food, or you see them eating a hamburger from McDonalds, which might be the only thing that sounds good amidst endless waves of nausea? Stop fucking judging them for their food choices. Take some time to read what others are saying about the social injustice behind the food shaming diet and health food industries, because, yes, it’s there, too, friends.

You, my able-bodied friends, are only in charge of your own body. Not anyone else’s. And your “well-intentioned” judgement come off as privileged assholery to those of us who are living a daily reality with chronic illness or disability.

So in conclusion, please stop using the term “Big Pharma” if you consider yourself an ally to the chronically ill and disabled. Please?

Edit: Someone contacted me to ask if I’d change my usage of “cis-gendered” to the correct “cis-gender.”  I went ahead and changed it to reflect correct usage, and I wanted to publicly say thank you for doing so.  Not only do I consider myself an ally, but I’m also a language nerd who wants to use terms correctly.  If anyone else is interested in the explanation as to why, here is the link I was given: http://www.democraticunderground.com/10024810648

131 thoughts on ““Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase”

  1. I don’t know how you use Big Pharma but in my circles Big Pharma just means the pharmaceutical industry and their stranglehold on medicine in the world. I criticise Big Pharma not for creating medicine but for withholding it from billions of people who can’t afford to pay and destroying any chance of treatments in the Global South.

    Liked by 4 people

    1. Why is it so hard to just say “The pharmaceutical industry?” Do you understand that people who are on medication regularly have to hear people who are anti-vaxxers or anti-pharmaceuticals rail on about “Big Pharma?” I’m well aware that term originally meant something much more important, but it’s been co-opted by people who are very much against what you are wanting to discuss. And I don’t appreciate the “I don’t know how you use Big Pharma but…” sentiment. Please stop to consider that other people may be having vastly different experiences as you outside of your own life and circles. Does your circle possibly bandy about the term “mansplaining” as well?

      Liked by 8 people

      1. I just had no idea that Big Pharma meant the conspiracy nuts of the hippy movement who are against medical science. Whenever I’ve heard it it’s always been anti-capitalist. But I guess that’s just my bubble. But I’m a bit dismayed that I feel like I need to out myself and my experience with the pharmaceutical industry in order to state a position. Rather than give specifics, I don’t think it’s legitimate to attempt to represent all people with disabilities and their position on this issue. I hate people who try and peddle hokey ‘cures’ but I honestly hate the pharmaceutical industry more and how they have destroyed the lives of people from my home country and neighbouring countries.

        Like

        1. “But I’m a bit dismayed that I feel like I need to out myself and my experience with the pharmaceutical industry in order to state a position.”

          Imagine how dismaying it is to have to assert your very right to exist because autism hysteria and the antivaccination movement are intimately intertwined. Here’s an example: https://autismjungle.wordpress.com/2011/01/21/repost-for-your-amusement-anti-vaccination-bingo/

          http://archive.autistics.org/library/bingo.html Have a lookie at the bingo cards.

          Liked by 4 people

    2. Protip: just use “pharmaceutical industry corruption” and you’ll avoid all connotations of antiautism, antivaccination, antiscience pseudobabble, and general superior ableism. I have no issues with people criticizing corruption. But acting like “big pharma” carries no connotations of these sentiments is naive at best.

      Liked by 6 people

    3. I just had no idea that Big Pharma meant the conspiracy nuts of the hippy movement who are against medical science. Whenever I’ve heard it it’s always been anti-capitalist. But I guess that’s just my bubble. But I’m a bit dismayed that I feel like I need to out myself and my experience with the pharmaceutical industry in order to state a position. Rather than give specifics, I don’t think it’s legitimate to attempt to represent all people with disabilities and their position on this issue. I hate people who try and peddle hokey ‘cures’ but I honestly hate the pharmaceutical industry more and how they have destroyed the lives of people from my home country and neighbouring countries.

      Like

      1. >>I honestly hate the pharmaceutical industry <<

        Hating an industry is different than shaming those who must use it. And if you're going to volley the idea that they do not *have* to use it, read the original post again, and note that your hate or experience should in no way determine another's choices.

        Liked by 4 people

        1. Yo mate perhaps read my comment again, I have no problem with people using pharmaceuticals just like I have no problem with people using petrol. But I have a problem with those industries.

          Like

  2. I don’t have chronic pain, but I had chronic mental health problems for decades. I’m relatively well now. It took a lot of hard work on my part, but I couldn’t have done it without drugs. Probably I’ll have to continue taking medication for the rest of my life. I hate taking drugs but it’s worthwhile to be able to work and maintain healthier relationships. I equally hate the stigma and secrecy around mental health and treatment. The healthcare industry is broken in many ways and yet my recovery owes some thanks to some dedicated people who work in the industry.

    Thank you for this supportive and informative post. I realize I’ve been guilty of ableism at times. I don’t have persistent physical pain that limits my activities.

    Liked by 5 people

  3. I just want to say, first off, I felt guilty at first when I read that quote, because I -have- recomended yoga, meditation, and dietary changes before when asked for advice by someone with fibro. Then I read the rest of the article, and saw what you were actually saying, and I felt a -little- better. Not much, because I realize now that the -way- I normally word it probably sounds _really_ insulting, but a little. A smidgen.
    Let me clarify- I am not disabled, for the most part. 99% of my issues stem from my anxiety disorder, which stems from an abusive jackass boyfriend. (The other one percent is inherited, including sinus headaches that feel -almost- like migraines, migraines, and another form of headaches that we -thought- might be a chiory- or however you spell it- malformation, but turned out to be, which we have no CLUE what it is other than it hurts.) But my mother -is- disabled, and has been as long as I’ve been alive- Fibro, and SAD, and a whoooole bunch of other shit. So when someone asks me for advice, I go to her first, especially if it’s related to a chronic pain disorder. My reasoning behind each suggestion:
    Yoga: Purely for relaxing the muscles. Not for any spiritual reason- but it helps some people, so if it can’t hurt- I wasn’t aware until now that it could!- it -might- help.
    Diet: When I say diet, what I actually mean is: Adjust what you eat so you are getting the proper nutrition and shit. AKA, exactly what you do. I know everyone has different dietary needs- hell, even without medication and illness getting involved, lifestyle differences affect that!
    Meditation: This is one that I always recommend, and not for spiritual reasons. Kinda? I think? I may be classifying it. I recommend it because one- even if it doesn’t do anything for the pain, maybe it can make it a little easier to deal with for a little while- two- I know it helps me when I’m on the verge of an anxiety attack, so, again, maybe it will help someone else- and three, if nothing else, if you do it right before bed it can sometimes help you -fall the frick to sleep-, which can be a blessing in and of itself.
    Sleep: Another one with multiple reasons! The first one, in my opinion, seems obvious- if you’re asleep, at least you’re not -consciously- hurting, so hey, there’s a win! The second one is that my mother always recommends it, but I can’t remember why off the top of my head.
    Everything else I recommend is herbal remedies or otc meds that you wouldn’t normally think would help, so not exactly falling under the scope of things being looked at here.
    Mn. I have apologies to go make now, now that I realize how dickish I may have been.

    Liked by 2 people

    1. How about don’t offer advice if you don’t have experience with what they’re going through?

      Someone telling me to “get more sleep” is going to make me want to stab their eyeballs out. One of the side effects of EDS can be adrenaline surges that make sleep nearly impossible. Sleep and I have a tenuous relationship at best, and at worst I’ve had periods of my life where it was impossible for weeks at a time to get more than 3 hours at a stretch. One notable period involved a 2 month stretch with only the shortest of catnaps due to a special needs newborn who wouldn’t gain weight and thus permanently cured my of my ability to sleep 8 hours at a stretch.

      Yoga: Just don’t. NO ONE should advise yoga to ANYONE in chronic pain unless they are deeply familiar with the cause of said chronic pain and know for a fact that yoga won’t make it worse. “Have you tried yoga?” is shorthand in my circle of friends for “I don’t know jack about what I’m talking about and am going to offer you assvice and should be avoided in the future.” We actually say, “Have you tried yoga” as a joke when someone has been given lousy advice by someone who didn’t know what they were talking about.

      Meditation is not going to fix what’s wrong for anyone, though it might, maybe, help them cope with it a little more easily. Assuming that traditional mediation poses don’t exacerbate the pain and that they can get through the time without it being excruciating.

      Diet: The only reason to ever talk about what someone else eats is if they have specifically said to you, “Do you have any advice about what I should eat?” You might talk about why you eat the way you do if the conversation goes that way, but keep it to what you know from your personal experience or the close personal experience of loved ones. My middle child has to avoid all citric acid and I talk about that but it is never “prescriptive” because that doesn’t apply to most people. She has a rare chromosome disorder and it’s one of the things, you know? Other people need to know so they don’t offer her citrus, for example. I know that going AIP Paleo helps my pain levels, but it also leaves me feeling panicky and gross about food and isn’t good for my mental health. Sometimes there are very good reasons why someone doesn’t make a change that “will help”.

      Now… as for your feelings of “oh my god, I’ve been doing it wrong”… once you know better, do better. For most of us with chronic pain, this kind of thing blends into a cultural wash of “people keep telling me”, and you don’t stand out as vastly different from everyone else in our lives. Take a deep breath, say, “oops” and check your reflex reaction in the future when someone says something is going wrong. Ask if they want or need any help figuring out strategies for dealing with their illness. Do research before you offer advice if they DO say yes. It’s natural to want to help fix things, but sometimes someone just needs to say, “This is hard. I’m struggling with this.” And there is likely not an easy answer.

      Liked by 5 people

      1. Like I said- I don’t have personal experience. I don’t offer unsolicited advice, either- but if they ask me, I feel guilty if I don’t offer anything. Most of my advice, I just relay to them from my mother, who -does- have personal experience. Yoga is definetly something I am never ever going to reccomend from this point on. And the rest- well, yeah. I’m gonna take your advice, and do a lot of research from now on.
        My reflex reaction is, actually, to say, “Man, that sucks. Do you need a hug? Or would that be painful?”

        Liked by 3 people

        1. The better thing to say is “Is there anything that I can do for you?” If you get asked for advice, ask “What have you tried/done already?” That lets the chronically ill person (of which I am one) tell you what they need/want/have done, rather than you trying to assume and speak for them.

          Liked by 1 person

  4. Pingback: Weekend Links, 26/05/15: “Self-care is not a pie filling”/”Self Care is Not About Smoothies”
  5. Pingback: Sunday Links, 4/26/15 | Tutus And Tiny Hats

  6. Thanks for this. I’m not a person who uses “big pharma” ever (ever!). That said, I often fall on my ass in regards to my privilege and ableism, even though I also have disabling headaches and a chronic disease that sometimes represents in pain. This is very helpful to keep in mind. I appreciate you taking the time to outline this, so I can be a better ally in other contexts.

    Liked by 1 person

  7. My disability is one that people don’t even think is real for adults. I have severe ADHD, and even pushing myself to the limits of my capabilities, if I don’t have my meds, the correct dosage, working at 100%, I am not functional. And I don’t mean working a 60 hour week and then doing graduate school. I mean, the longest I’ve ever kept a job was 4 years, it’s taken me ten years to get halfway to a bachelor’s degree, and my house looks like it ought to be condemned. At my worst, I literally cannot have a coherent conversation. Diet and exercise don’t fix that. But because I’m A. an adult and B. fat, doctors assume that the meds are my attempt to lose weight, and I have to fight for them every single time. And don’t get me started on the “we’re medicating our kids to death” crowd, because gods forbid we should prevent people from struggling like I do, right? Racket or not, “Big Pharma” has given me the use of a functional adult brain, and I’d like to keep that.

    Liked by 4 people

    1. I understand that one, I have ADD and chronic depression. I have had them since I was 9 but never got meds for them until I was an adult. I was diagnosed a second time when I was 19 so yes it can exist as an adult. A lot of people would like to believe that it disappears when we become adults, but that is not always the case. Some of us will have to deal with it our entire lives. You know I’m with you I will keep “Big Pharma” so I can function on a daily basis and attempt to be employed again. My biggest struggle is being on time to things so keeping a job can be a struggle at times. And I have never been given any slack with having ADD and employment. It can be very frustrating at times.

      Liked by 2 people

  8. This was the BEST blog post I’ve read in a long time!! You SLAYED em! Rafi I see you caught some feelings cause this article is about YOU. When someone tells you your behavior/language is annoying/damaging and you come back whining about your good intentions, the original poster is just gonna get that much more irritated. You don’t get a cookie for your good intent, seeking to understand and showing compassion are much better for everyone.

    Liked by 1 person

  9. My daughter and have some of the same chronic illnesses that you do. You do not have to take the gluten challenge to be tested for celiac – there is a blood test to test for 2 celiac genetic markers. There is also NCGS (Non Celiac Gluten Sensitivity), which is getting more attention. My symptoms of a gluten attack are more MS-like, my daughters’ are more like lupus.

    We gained insight from getting our genetic profiles done. It takes a lot of research to figure out how to interpret the research (I don’t trust holistic doctors). Selective use of mineral supplements and increasing intake of certain vegetables has helped lower anxiety, pain, migraines and asthma. There is mounting evidence-based research about the role of the gut biome in the immune system & brain functioning, so I incorporate some of that as well. I’m able to do a little bit of exercise.

    It is a long road. Recently had a setback when I had to go on an antibiotic for an infected tooth and lost a year of progress. I don’t have any expectation that I’ll ever be well or free from pain. Most people are jerks to disabled people. Too often it’s the doctors themselves.

    Liked by 1 person

    1. I have the genetic markers for celiac, which is why I’m comfortable saying it’s probably celiac over non-celiac. My GI and I had a long discussion about standard testing, and she said that she didn’t think it was worth the risk since I was going to stay gluten-free anyway. After about a week of eating gluten, my husband begged me not to challenge.

      I can definitely say that my immune system has been stronger since eliminating the foods that were making me sick. Working in the food allergy and intolerance community has definitely shown me that when people locate what is making them sick(er), it makes a world of difference in their overall health.

      Liked by 1 person

  11. Reblogged this on Intuitive Voyage and commented:
    I am disabled, but am doing much better. I can be misunderstood easily in that changes in medication and discovering hypothyroidism helped. I realize not everyone with Bipolar disorder is helped by thyroid medication. I just wanted you to check on the possibility of hypothyroidism in case it could help.

    Like

  12. I want to thank you for such a wonderful essay! I have had to live a good part of my life in chronic pain stemming from very severe Crohn’s disease. When I was first diagnosed, it was a disease that even most doctors hadn’t heard much about. I had doctors try to convince me that I was exaggerating my pain for attention and I should just “take it like a man.” These same doctors would then try to tell me that since they had read that pain was one of the main symptoms of Crohn’s, they couldn’t give me anything for pain because I might not notice that I was having a flare-up. Luckily my main GI doctor at the time was very good, and I learned early on to tell any other doctor to shut and call my GI.

    Nowadays, after several surgeries, including one that went very badly and left me septic for several months, I have finally found a medication that has put the disease itself into remission. However, the damage has been done. I now need 6000 calories a day to maintain body weight, and due to issues with nutrient absorption I rapidly form kidney stones, and I have a constant battle to keep from developing several vitamin deficiencies. The last major surgery also has left a spiderweb of scar tissue and adhesions throughout my abdomen that are a constant source of pain, and I have developed multiple hernias along the surgical scars, which make it painful to even sit up for more than a couple of hours at a time.

    I am still constantly bombarded with advice, most of which I know is well-intentioned, but still insulting all the same. People constantly ask if I’ve seen the television commercials for the new “wonder-drug” Humera, and wouldn’t that fix everything? I have to patiently explain that I have already tried it, and it didn’t work, and in fact it only works on 50% of people suffering with Crohn’s. I have to explain to people that while I don’t have any specific dietary restrictions, I’ve learned through trial and error what I can tolerate and what I can’t, and that the only way for me to prevent rapid weight loss is to eat high calorie food in large quantities, and sometimes the only feasible way to do this is to eat fast food and/or other fattening junk food. Most supplements like Ensure make me nauseated, and even if they didn’t the amount I would have to consume each day is financially not possible.

    I have had several people try to convince me that “Big Pharma” is intentionally keeping me sick, and that I should seek out a more holistic approach. I find it rather ironic that when most people use the word “holistic” (which in my eyes is to look at ALL options, and not automatically discount any idea until I have researched it) they mean the opposite of conventional western medicine. And I have come to realize that if someone talks about “Big Pharma” as some sort of conspiracy (as if every pharmaceutical company works together on some master plan) I will automatically assume that they have no idea what they are talking about when it comes to health and medicine.

    Lastly, I want to add that chances are the one with the most expertise in the room about a given disability is in fact the person who suffers from the disability, no matter what you may think you have found on the Internet. Unless you are a gastroenterologist, it is safe to assume that I know far more about Crohn’s disease than you do. And even if you are a GI doctor, there is still a good chance I know more about my disability than you do. The same goes for any other chronic disability.

    P.S. I hope you don’t mind that I am going to share this with everyone I know.

    Liked by 2 people

  13. I cannot agree with you more. I cannot stand pseudoscience and the lazy thinking it encourages. I actually work for “Big Pharma.” I’m not a marketer, or a salesperson, or any kind of business-person. I am a scientist, and I work on the research side of things. I’ll be the first to agree that pharmaceutical corporations, like ANY corporation, is subject to corruption. They most certainly care about their bottom line—but there’s no lie there. They are a business and businesses exist to make money. At least they make money by helping people. What’s more, harming people hurts their bottom line, so they’d much rather be helping people.

    At any rate, I can tell you that the scientists I work with are there because they love science and care about helping people. We never see patients, we never even see the business side of things—in the lab, we do our best to help find therapies for people with chronic and/or deadly illnesses.

    I also get migraines, so I can empathize with you there too—research is being done since migraine is not well understood, but it could be a long time before we know enough about to come up with reliably preventive medicines. And the woo is plentiful, where migraines are concerned—many well-meaning, but totally wrong people suggest things like: stop eating (any number of foods), just put an ice pack on your neck, acupuncture, pot brownies. I don’t wish any ill to these people, they are just trying to help, but the more woo is spread, the less room for actual science.

    Liked by 3 people

  15. I just broke down in to tears reading this. I’ve been a chronic pain sufferer for 3 years, with no one able to tell me why or how or even help me in the least. I rely on medications to go about my day (read: take care of my two small children), and I can’t tell you how many times I’ve been accused of being a “drug seeker,” “on WAY too many meds,” and “probably just have a lot of emotional issues” that I should work out. Of course I have emotional issues, people. I live in chronic pain and still have to do all the things that people not in pain have to do…other than spending 2-3 days a week at various doctor appointments. I desperately want a third child, but guess what? Fetuses and opioids don’t mix. I’m sick and tired of being sick and tired, as the saying goes. And I wish that everyone would mind their own goddamn business when it comes to my pain, because it’s MY pain. I wish I could hug you for saying all the things I have wanted to say for so long. xx

    Liked by 2 people

Comments are closed.