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

(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

World Rare Disease Day 2015

image
Chronic illness selfie.

Today is Rare Disease Day. I was going to record a video, but ironically my rare diseases got the best of me the last couple days.

In the middle of a dental emergency gone medical, I have been to the dentist, the ER, urgent care, and the cardiologist in a little over a week. By the end of this week I will have been on 3 types of antibiotics, 2 narcotics, had a shot of morphine (or as I like to call it, worthless), and received a new diagnosis or two that I already suspected I had, since it’s related to the other 3 rare diseases I have.

I have dysautonomia and hyperandergenic postural orthostatic tachycardia syndrome, which means that my autonomic nervous system flips out when I not laying down. The autonomic nervous system controls all the things your body does that you don’t have to think about: blood pressure, heart beats, breathing, sweating, digestion, fluid regulation, and so on and so forth.  Something about the infection in my jaws and teeth along with the stress of it all set it off this time in an obvious enough manner that got me diagnosed. I’ve gained 10 pounds in the last week due to swelling. I’ve been in a constant state of tachycardia (fast heart beat) and palpitations (noticeable heart rate) along with high blood pressure as well. 

I get sweet old lady compression stockings to go with the cane I use to stay upright. My health insurance doesn’t want to pay for them, much like they don’t want to pay for an ultra lightweight wheelchair I’m trying to figure out how to get so going grocery shopping doesn’t take me out of play for 4 days afterwards due to fatigue. Let me tell you, compression stockings that go up the entire leg? Pricey. Like pair of quality jeans expensive.  Meanwhile I’m also wrestling with the state over SNAP benefits, because we can’t afford the multiple food allergy and celiac (medically suspected but not diagnosed) diet otherwise that keeps us all healthy… Which is also low in vitamin a while high in potassium and sodium.

So my rare diseases, which all but the pseudotumor cerebri my husband also has… Every day is rare disease day for us. We live with Ehlers-Danlos Syndrome Hypermobility Type, Dysautonomia/POTS, Wolff-Parkinson-White Syndrome, Pseudotumor Cerebri, multiple food allergies/intolerances, fibromyalgia, and other things I’m too foggy to remember every day.

But we manage and we smile. We have as much joy as sorrow. And we even have some good days.

I’m going to talk more about these conditions this year, because it’s part of my truth and story. I’m a disabled person. I’m not going to stop talking about it… Well, okay, I’ll probably hold off on until recovery after getting 6 teeth removed on the 10th. I don’t plan on blogging while on narcotics (except, you know, today…).

Getting Ready to Birth a Full-Grown Goddess From My Head?

It sure feels like it…

I will do this. I can do this. I can be strong and get things done that need to be done. For the last three months this has been my daily mantra almost constantly. Those still waiting for me to get my thank you gifts to them from my crowdsourcing project will tell you that I have not done so well with pushing myself to keep up. I’m truly sorry for the delays. I have hope that I will get to things this week, but I hadn’t really seen myself getting admitted for testing… So I’m accepting the fact that I may be out of commission for a while longer.

Those in my house will tell you that the dinners turned more and more towards processed food than from the vegetables and local meat that I’m so passionate about, because it seemed like I just couldn’t deal with cooking or housework anymore. Now, I go through phases, since I live with chronic illness. But as things started to pile up, I haven’t seemed able to mentally organize the clutter where I used to be able to.

I silently noted one day that I’d been an entire month, day-by-day passing, with a pressured headache. Now, I’ve had these headaches for years with less severity and for shorter spans of time. Decades even. And I was told my an optometrist that I had abnormal optic nerves that I should get looked into if I ever develop a pressured headache. There was a problem, I didn’t have insurance. The headaches at that point went away, and so I didn’t worry about it much.

But this round of headaches were different. They didn’t go away. I woke up most mornings with at least the pressure there, and I went to bed with a terrible stabbing feeling rattling throughout my entire head. If I lay down for a few hours, I get some relief, but sometimes not.

I knew I needed to go to the doctor about it. I mentioned it to my rheumatologist during the ridiculously long appointments that led me to an EDS-HM diagnosis, and I was told I should probably look into it. Then while in the middle of that, my mortal husband’s mother discovered she had cancer, leading us to make multiple trips to visit her while she was taking both chemo and radiation treatment. Then we realized that my husband also has EDS-HM, and we wound up having to look into his heart. And then he had to travel to present his research at a conference…

Let’s just say that my life has been a chaotic mess filled with doctors appointments, travel, and watching my 2-year-old.

I managed to go 3 months with a headache before getting in to talk to my doctor, who subsequently lectured me about my Advil usage to manage my joint pain and told me that my optic nerves were no big deal. I guess I didn’t do a very good job of explaining to her what was going on. She referred me to a neurologist anyway. I left the appointment feeling embarrassed and like a hypochondriac. I cried in frustration afterwards, and I’d been so quiet about what was going on that my mortal spouse didn’t understand why I was crying. I couldn’t explain; I couldn’t manage to find the words.

Neurology yielded a different result. The doctors I saw there recognized something was going on. I didn’t mention my optic nerve, because I was still feeling silly about that. I was told I needed to have it monitored and that it was likely nothing. A lot of people have abnormal optic nerves. Plus they’d decided to do an MRI and have a full eye exam to be on the safe side of what they thought were atypical migraines.

So on Friday, I went in for all the testing. The opthamologist told me that he didn’t see anything going on in my exam. I asked about my optic nerves then, because I’d started to really let it sink in that over the last few years I’d slowly been developing a lot of symptoms of a brain tumor.

(Have you ever noticed words out of place in my writing? Sentences not parsing correctly? Yeah, I haven’t always had that problem. Now it happens at a pace I inevitably miss something.  I’ve been told that may be permanent at this point.  Great.)

The opthamologist didn’t think he saw anything, but he went ahead and had them take pictures of my eyes. He was really busy. As we were sitting in the waiting room, my neurologist called, but since we were in the hospital I lost the signal. I was finally told I was free to go.

My neurologist called back as we were leaving to tell me my MRI results were back. She said it showed I have pseudotumor cerebri (an outdated term for intracranial hypertension). And then she asked if I’d be able to be admitted on Monday to the hospital to look into it more and get a spinal puncture to relieve the pressure.

I was in shock.

The opthamologist called back, very concerned, because he’d had a chance to look at the pictures after looking at my MRI. Sure enough, my left eye was showing optic nerve swelling indicative of pressure in my skull. I assured him that I was going to be admitted on Monday, because he really wanted me to come back and talk to him more. But by that point I’d been at the hospital throughout the day for almost 8 hours. I was done with it, since I knew what they’d found.

What is at risk here beyond my sanity? My vision. If I let this go and it gets worse, I could not only be dealing with my head constantly hurting and no medication working for it, but I could go blind. So we need to get it under control. Quickly as possible.

There’s a catch to the fact that I have intracranial pressure… I have Ehlers-Danlos Syndrome Hypermobility Type. That means that it’s possible that I have a brain malformation called Chiari Malformation that isn’t showing up on regular MRI, because the tissue that holds my neck together and brain in place could be so lax that it shifts to a normal position when I lay down. It explains why I feel so much better when I’m laying down. The problem with having this and possibly not knowing about it or other spinal conditions that go with all of this is doing a spinal puncture could make the entire situation worse instead of better.

It’s suggested that when looking for these things in people with EDS-HM, they perform an upright MRI instead of a normal one. So if anything points to Chiari beyond what is already there with the tests they are running, I will be requesting to travel the 2 hours to the next city over to get an upright MRI instead of getting the spinal puncture that would relieve this painful, awkward, and annoying pressure in my head.

Either way, with idiopathic intracranial hypertension or Chiari malformation, I may end up having to have surgery if drug treatment doesn’t work. And either way, if that happens, I’m going to have to find a surgeon that knows the complications that can arise with my disease…  Poor wound healing, stitches not holding, screwing up my neck vertebrae more than they already are, etc.

So there’s that. I’m not typically one to ask things for myself, but if anyone could spare a moment to pray that they don’t miss anything tomorrow when they start looking in and that there’s actually someone on staff that knows about my rare disease and everything that can present with it, I’d really, really appreciate it. I’m being told I’m terribly Stoic about this, but I think I may just be waiting to crumble when it’s all said and done instead of before it begins.  Come Tuesday or Wednesday I may finally be a mess.

I say again, this isn’t becoming a chronic illness blog, but it is my personal blog…  It just feels like it lately, because my reality is managing this stuff constantly.  My life is 5% terrifying symptoms and 90% feeling like a complete hypochondriac that just can’t get her life together most of the time…  And 5% doctors finding terrifying things actually happening.  Good times!

Ehlers-Danlos, Hypermobility, and Finally Finding Answers to Chronic Illness (Subtitle: Where I’m At)

I have been quiet lately. I have a lot on my plate. I am behind in life and everything I have promised to others. I am sick and tired constantly. This is a flare. The pain is always looming on the edge of my bodily perception. The bermuda grass is taking over my garden outside, and as I continue to find myself sick feeling if outside in the sun too long I’m beginning to pack away the dreams of a farm. Maybe next life.

We’ve traveled a lot in the last couple months. My husband’s mother was diagnosed with a rare form of cancer, so we have been traveling back and forth to see her as she goes through radiation and chemo. We went and visited my father in Iowa for the first time in 4 years. Travel makes me sick. I’m finding as I get older (because 33 feels ancient in this body), it’s getting harder and harder to recover from the pain and fatigue from a long car ride.

After nearly 20 years of trying to find an answer to my chronic fatigue and pain, I was diagnosed last month with benign joint hypermobility disorder. That’s an outdated term for joint hypermobility disorder, which is also likely a full-blown case of Ehlers-Danlos Syndrome Hypermobility Type.

We’d worried I had Lupus. We looked at the criteria for Fibromyalgia and nodded slowly. We found that I was genetically at-risk for Celiac Disease, and considering how we discovered my bipolar disorder was actually a severe case of gluten-intolerance we suspected that I did, in fact, have Celiac Disease. It was just that I’ll never be able to confirm it, because after being off wheat for my daughter’s food problems as an infant taught me that I can no longer eat gluten without getting violently ill. There’s also an egg allergy/intolerance thrown into the mix.

But even with the food issues worked out for myself, I was still in constant pain. I was still sick. I was finally sent to a rheumatologist with a full lab work up saying I was slightly insufficient in vitamin D and had inflammation… And a history saying that my liver freaks out any time I get put on a new medication and starts eating itself.

At the end of 4 hours split between 2 appointments and 5 rheumatologists (at a teaching clinic), I came home angry that all of my problems could be blamed on being double jointed. They might not have spent enough time explaining things to me. When I started googling, though, the final puzzle piece fell into place and I realized that they were, in fact, correct.

I have Joint Hypermobility Disorder, which depending on what expert you talk to is also Ehlers-Danlos Hypermobility Type. This means that I am incredibly flexible, which I could have sworn was supposed to be a good thing. What it really means, though, is that my muscles are weak and fatigued constantly, because they are working overtime to keep my joints from dislocating…

Because my joints dislocate or subluxate (slip in and out of place), or they do anything in between those two things. It’s painful. I’ve dislocated a hip in my sleep. I’ve dislocated my back bending over to pet my cat. My neck is so weak that I recently cut my hair, because long hair was giving me severe headaches due to the weight it was putting on my neck. I am tired all the time, because my spine compresses and causes severe, burning nerve pain up my back down to my toes.

I fall sometimes. My ankle rolls, and suddenly I’m on the ground.

EDS is a genetic callogen defect. Collagen is the glue of the body, and it’s in most of your body. Mine doesn’t work right, and because of that some days I feel like I’m falling apart. This has been going on since I was a teenager, at 14 my knees started going out. I had a doctor tell me at 16 that my sciatica was simply due to being obese and having poor posture, because, you know, sciatica is really common in 16-year-olds.

My pregnancy was a nightmare, but I couldn’t get my OB to listen to me, because she’d had a bit of back pain while pregnant and it was normal…  Except many women end up in wheel chairs and destroying their backs with pregnancy when they have this, and, oh right, epidurals?  They don’t work, because local anesthetic doesn’t work.

The funny thing is that beyond the pain and fatigue, I thought all of this was normal. Despite it being a rare disease, both of my parents have these problems to varying degrees. My grandmothers on both side had problems

With this I most likely have an autonomic nervous system problem, which causes my heart and blood pressure to do crazy things throughout the day making me feel weak, dizzy, ill, and anxious. My heart races. I find myself having a hard time breathing. Apparently this isn’t normal? Apparently it’s not just anxiety.

Apparently it’s normal for a person with EDS/JHS to be diagnosed with a million things, including mental illnesses, because doctors learn this is a rare disease they will probably never see. It took me nearly 20 years to get a diagnosis, more if you count my stomach problems that started at 9.

My husband is now working on getting his own diagnosis for EDS (I would have preferred the odds be used towards winning the lottery instead of us both having the same rare disease, thanks). Our GP looked shocked and said, “I’ve never actually seen this before. I’m going to have to research more,” when he pulled his skin away from his arm and neck to show how it stretches…  Well, after she cringed and gave a very professional “Ew.”

I don’t plan on this becoming a blog about my chronic illness, but I probably will vent from time-to-time about it. This is a personal blog, after all, and I talk about my life here. This is a huge part of my life. Now my life is filled with physical therapy appointments and starting next week cognitive behavioral therapy to help me manage the pain and anxiety that has developed due to pain and what we thought were panic attacks.

Mainly I just wanted everyone to know I’m still here. I’m still alive. I’m working on stuff for the blog this afternoon, including videos! I’m working on getting thank you notes written, but truth be told I’m slow because lately my hands haven’t been wanting to hold pens much… Which doesn’t bode well for my art. Little bit at a time. I will get things done.

More on EDS: http://www.ednf.org/
More on Hypermobility Disorder: http://www.hypermobility.org