“My Leaky Body”

I listened to an interview with Julie Devaney, who has written a book called My Leaky Body about her experiences as a chronic digestive disease patient in the healthcare system… It really brought back the frustrations that I’ve had as well, and the real difficulty that the medical system has dealing with chronic disease and diseases that aren’t visually super-obvious. Her condition seems to manifest with pain and diarrhea. Mine manifested initially with pain. I’m sure there was strength loss as well, but I started so much stronger than the average person that it took many years of degeneration for doctors to believe that there was any degeneration because even with years of muscle loss I was still much stronger than they were. That should have been a good thing but it wasn’t…

In the interview (the portions I heard — I had to take a break from it to pick up my monstrous weekly bag of twenty bottles of medication at the pharmacy) Julie talked about how patients are forced to “act sicker” and how hard this is. With most medical professionals, the squeaky wheel gets the grease. However, most people don’t like expressing pain in public. So when you go and talk to your doctor or specialist, you suck it up and act “professionally”. You speak clearly and calmly. You don’t downplay the pain, you tell them about it in detail, but you do it in a disconnected manner, both because it’s our nature to pull it together in public, and because disconnecting from the pain to talk about it is the only way to stop from breaking down into sobbing, which is not just embarrassing but makes it impossible to tell your story. Unfortunately doctors have this thing called “the unreliable patient”, a trained concept where they basically ignore the patient’s testimony as unreliable, and go by what they can observe about the person and their behavior instead. Problem is, with chronic conditions, the patient has to learn to cope. It’s not like a car accident where everything is a surprise and the response is going to be more carnal. So in chronic cases, all you can do is listen to their story and believe it.

“Believe” is really important too, especially in pain cases. Doctors are way too eager to write a person off as a con artist junkie pretending to be sick in order to get drugs. Because of this, probably millions of people are denied pain treatment because there are a small number of people getting pleasure without permission or so-called “need”. It’s completely messed up that the medical/political system feels that it’s better for a people to be in pain if treating their pain also comes with giving pleasure to a small number of junkies. The worst part is that true drug addicts are extremely good at acting sick. They really know how to play the doctors and play the system — far better than actual patients. So these “safeguards” do little toward their intended purpose, and just end up hurting people.

Another thing that Julie talked about, also related to the “unreliable patient” fallacy, is the problem with many chronic diseases, especially rare ones like my genetic condition (which is shared by only a handful of people), is that they are highly variable, difficult to observe externally, extremely difficult to diagnose, and usually not part of the typical medical curriculum. Thanks to a large degree to the Internet, patients have access to other people with the condition around the planet, are able to online read exotic studies in specialist medical journals that few doctors outside of that tiny field read… As a result, patients are often far, far more informed about the conditions that match their symptoms than their doctor. Unfortunately doctors, used to being (and enjoying being) the “expert”, are often deeply offended by informed patients. So much so that they discount any information. I used to think it was helpful to print out relevant articles and information for my doctors — for most of them, it just pisses them off. Perhaps they find it insulting. In any case, patients are forced to learn to be deferential, to figure out ways of tricking their doctor into thinking they solved the problem… Figuring out a way to get them to take the solution you’ve found and believe they found it. It’s messed up — and few people can manage all of this subterfuge, the “acting sick” demanded, while also coping with a debilitating and painful condition.

The part that really sucks is that once a doctor has committed themselves to treating you like a hypochondriac or drug seeker, they may get deeply upset and offended if and when proof finally arrives that you are sick — of course for many chronic conditions that proof never comes. Living in that uncertainty is hell, because part of you starts to believe the accusation that you are crazy. You start believing that maybe you are just a psychiatric case fooling yourself into thinking you’re in pain. I got “lucky” (in quotes because in some ways I’d rather be crazy) because after years of not being taken seriously — the only symptom besides my complaints was mildly elevated CK levels (indicating muscle injury; elevated CK levels can come from exercise for example) — they did a muscle biopsy on me, as well as a CT scan, and a test where they stuck needles in me and sent shocks through the muscle to check them out. The CT scan showed vague abnormalities in the muscles, with the degree directly related to the pain reported by me. The electrical test was similar — muscles weren’t working right. The biopsy came back with the vague diagnosis of “some unusual muscle structures”. And that’s it. So at that point they could see something was probably wrong, but they didn’t know what or why. Subsequent tests for various forms of muscular dystrophy and so on were negative. It wasn’t until I got a new doctor a year later with a bit more expertise that said “let’s take another look at that biopsy” and ordered it over to his hospital so he could take a look at it. The instant he saw it we had a hard diagnosis, because the “unusual structures” were so obvious and characteristic. Bizarrely, being told that I had an incurable and untreatable disease was one of the happiest moments I’d had in years — the doctor was shocked that I wasn’t traumatized instead.

So what happened when I brought this finally confirmed diagnosis to my primary doctors? They were angry. It forced them to see just how horrifically they’d treated me. How much pain they had caused by refusing me the pain treatment I needed. How much they had slowed down my diagnosis by ignoring me. One of them even terminated me as a patient for flimsy, fabricated reasons, and refused to even talk to me after being shown the diagnosis. Anyway… hearing the interview with Julie Devaney and listening to some of her stand-up show (she does a live version of her book) really reminded me how common this problem is in people with chronic and rare diseases… How many lives are made so much worse because doctors are not properly trained in how to deal with these conditions, and how to deal with patients… How out of date and out of touch many of the ideas in the medical community are.

I really want to recommend that if you have a friend or family member that is a doctor or otherwise works in the medical industry, My Leaky Body seems like it would be an excellent present that they would both enjoy and learn from. And of course it would be a great present for many people with chronic conditions — although there are many, myself included, who prefer to live their life with as little mention of illness as possible, so be careful. I know for me that my condition already affects and destroys so much of my life that I often feel very, very motivated to keep any mention of disease out of the parts of my life that I can keep pure… I hate being asked how I feel. I don’t like having to lie and say “fine”, nor do I want to tell the truth and say “fucking horrible, I hope I get hit by a bus”… I’d much rather just focus on the very tiny number of things that are still OK. Of course, here I am writing about it like a fool. So I will stop now as I’m not doing myself any favors. I’m rambling anyway. Sorry, not gonna proof read it either. If you want something proof-read (and funny), go for Julie’s book instead.


  1. Billy Pilgrim wrote:

    Thank you Shannon.
    Know that by sharing yourself throughout your life you have been, and continue to be, a helpful voice to others.

    Wednesday, September 26, 2012 at 9:45 am | Permalink
  2. HJP wrote:

    Thank you. Your writing here is one of the most truthful and understanding pieces on the medical problems people face now. I have a few issues myself, and I have been bounced from doc to doc, hospital to hospital, and had to learn to play “the game” to get treated. Although most of my conditions are not cronic, the ones I’m left with now are only manageable because I have learned about my body, how to fix myself, what I need, and how I can get a doctor to get me a ‘script if I crash and need one. I worry about my health a lot, it affects me every time I think of changing my life now. Whether I should buy a ‘new’ car because I have trouble getting in a out of the one I have. Whether I can afford to do that, becuase what if I get sicker, lose my job, and can’t afford a car anymore. I wonder if I will live to see the house paid off. I wonder if I will retire or die first. I try to live in the now, make choices to live like I want to live, but also like I might not. I worry now that I took a new job, I may die there. I work alone, behind gated access with an alarm system, even if I called 911 for myself, it would be a miracle if they got to me in time. I have made plans to disarm and unlock everything if I feel sick, just in case. I could probably go on disability, but tthat would require so much poking byt he docs again I don’t think I can handle it. Funny eh? I would probably get sick enough to end up in the hospital from the stress of getting on disability, and actually show how sick I am, and instead I hide at home and manage my illnesses and work to survive.

    Wednesday, September 26, 2012 at 11:13 am | Permalink
  3. Ashley wrote:

    Thanks for posting your experiences with chronic pain. As an RN, I see both sides of the spectrum in my everyday work. Yes, it is hard to believe that a patient’s pain is 10/10 if they’re sleeping or laughing and joking on their cell phone, but everyone’s tolerance of pain is different. I sometimes wonder if patients think I won’t give them pain medicine if their pain isn’t “high enough.” Heck, you can tell me that your pain is 0/10 but you still want pain meds to keep it that way, and if you have pain meds available, I will give them to you.

    Also, I’m relieved you found a doctor who’s a specialist in treating your condition. The frustration with finding a diagnosis and treatment can be emotionally draining to say the least. Your experiences make me appreciate how fortunate I was to find a specialist AND treatment after dealing with my rare disease for only a few months.

    I wish you nothing but love, support, and mental strength in dealing with your condition…

    Wednesday, September 26, 2012 at 7:53 pm | Permalink
  4. Rosemary wrote:

    I’m writing this on my phone at work so I hope this goes well.

    My mother had/has trigeminal neuralgia, which is aka the suicide illness because the pain can’t be controlled and the grand majority of patients with TN end up killing themselves to end the pain. She went so many years undiagnosed, being told she had multiple sclerosis, being thought of as a liar trying to get pain pills. Eventually she managed to get in to see a neurologist who happened to specialise in TN and they were shocked she had gone on for so long. After years of being in uncontrollable pain, she ended up electing to have this neurosurgery which has a massively high mortality rate because of how risky it is, but she said she would rather have died on the table trying to get relief, than go on living in that pain. I remember it all very well because I was 16 and it was in the weeks leading up to Christmas, so instead of knowing what Christmas had in store, we all had to know for sure what kind of funeral our mother wanted.

    She did end up living and now is pain free, which is amazing, but I absolutely understand your frustration in going so long being shuffled from seemingly uninterested doctor to another. I have followed you since around that time because I found solace in the bod mod community. I am sorry to know about your situation, I genuinely hope you find a better medical team soon.

    Thursday, September 27, 2012 at 1:52 am | Permalink
  5. Carol the long winde wrote:

    I feel you – I had a chronic condition that the doctor told me that she didn’t believe me until she saw my blood tests – I was severely anemic, reported falling asleep behind the wheel, heavy periods (which because of the way heavy periods were defined to me I couldn’t honestly say I had…but then when I read the full definition, I had heavy periods.) I finally passed out in the doctor’s office, and then she started treating it more aggressively. I switched docs and he doesn’t believe me either – despite my chart! Why go into medicine if you assume people are lying?

    Thursday, September 27, 2012 at 5:49 am | Permalink
  6. Carol the long winde wrote:

    And because I am in the US this basically took all our money, too. (And the first treatment I got triggered Crohns disease. good times.)

    Thursday, September 27, 2012 at 5:50 am | Permalink
  7. Lilirose wrote:

    Wow, Shannon, once again you articulated so much of what I feel. I’ve been “diagnosed” with fibromyagia, which seems to be doctorese for “faking pain”, in my experience…though recent symptoms show that it *has* to be something else. I’m just about to start with a new doctor and I pray I’ll be given tests instead of being ignored.

    Thinking of you…

    Saturday, September 29, 2012 at 3:03 pm | Permalink
  8. Aya wrote:

    Thank you for posting this. It’s so easy to believe that you’re alone. I’ve been dealing with doctors for 11 years now and I’m actually planning to get up early tomorrow, put my skates on and run up and down stairs on my toe stops to try and aggravate my hip problems. The hospital doctors have never seen me when it’s bad and I’m scared that they’ll kick me out as a drug seeker if my MRI results show nothing unusual. They wouldn’t be the first to come to that conclusion.

    Thursday, October 4, 2012 at 12:47 am | Permalink
Wow Shannon, that's really annoying! What is it, 1997 on Geocities? Retroweb is NOT cool!

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