What No One Tells You When You Get Diagnosed

I wrote a post a year ago about being disabled, and recently saw a post on the “Chronically Invisible” Tumblr that really resonated with me. I wanted to write this to reflect my experiences after having been diagnosed with Crohn’s Disease. Some of my experiences may resonate with people who have any kind of chronic condition, others may resonate with people with Crohn’s, and some may be just my own experiences.

I started having symptoms of Crohn’s Disease when I was 15, but didn’t get formally diagnosed until I was 22– almost two years ago. I had never heard of it before I was diagnosed, but as soon as I was, I immediately went and read everything online that I could find out about it. I thought I was prepared and well educated. Unfortunately, there are many things I only found out after a year and a half of dealing with it personally.

Doctors and the internet tell you about common symptoms you may experience, your increased risk for cancer, and some of the treatments you will most likely receive. But no one tells you the other things that come along with having a chronic condition.

No one tells you how it feels to have doctors dismiss your concerns, or how often it will happen. That this person who you’ve put your trust in to make your life bearable (or simply to help you survive) is probably overbooked and overworked, and when you tell them you’re in such agony that you can’t complete daily activities, they’ll shake it off and tell you to come back in two weeks if you aren’t feeling better…then say the same thing when you come back three months later (the next available appointment you could get).

No one tells you about how much time you’ll spend on the phone, arguing with insurance companies and hospitals over bills you know should be covered, but for a multitude of reasons and screw ups, you either need to cough up $200 immediately, or spend an hour and a half on the phone, just to get someone to say they’ll review it and maybe you won’t have to pay it.

No one tells you how hard it is to be on antibiotics when you have gastrointestinal problems because they disrupt your already sensitive GI tract, and how people without GI problems will say things like, “Oh, antibiotics, that’s not a big deal at all,” when you know you’re going to have non-stop diarrhea for weeks after you finish your course of antibiotics.

No one tells you about the drug-resistant yeast infections you’re going to develop every single time you’re put on steroids or antibiotics…which is every time you go to the hospital.

No one tells you that even if you have perfect veins that nurses and phlebotomists compliment, after two years of frequent blood draws and IV’s, your veins will become damaged and every time someone needs to draw blood, it will take several (painful) attempts.

No one tells you about the complete isolation you feel, laying in a hospital bed when you’re unable to sleep at 3 AM, despite being on a cocktail of pharmaceuticals. Or how isolated you feel when you’re surrounded by your healthy friends and family who are talking about their jobs and activities, which you’re too sick to do.

No one tells you how you feel like a bad person when you’re more sad than happy when a friend gets a job, because it just means you’re going to be spending more time alone.

No one tells you that the phrase “what doesn’t kill you makes you stronger” is absolutely true, and you know it’s killing you, just slowly.

No one tells you how much you’ll grow to hate battle metaphors for chronic conditions (“she’s fighting a disease”), because if you are in a battle, it feels like you’re completely unarmed against someone with nuclear weapons, because no matter how hard you “fight,” you can’t win against an incurable disease.

No one tells you how often you have to cancel plans that you’ve been desperately looking forward to because you just don’t feel well enough to do anything.

No one tells you how you start to measure time by doctor appointments, tests, and hospital visits.

No one tells you how much you begin to resent people who don’t take care of their bodies and then complain when they don’t feel well, because you would give literally anything to have some semblance of good health or a functioning body.

No one tells you these things. I can’t figure out whether it would have been better to know them ahead of time or to find them out the hard way. I guess I’ll never know, because no one told me.


Sarah is a feminist, atheist vegan with Crohn’s Disease, and she won’t shut up about any of those things. You really need to follow her on Twitter (and probably Google+, just to be safe).

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  1. Thank you so much for this piece, Sarah.

    I would add that no one tells you how your intelligence is underestimated, and your honesty will be questioned. Especially when you need pain relief.

    Or how your patience will be challenged when you end up in a one-sided conversation with someone about this or that nonsense remedy or therapy, that is always miraculous.

    Or how freaking lazy and guilty you will feel when you just have to stay in bed all day, or most of the day. Even in hospital.

    Or how awful it is to have your poop and pee measured in the hospital, when they don’t empty your hats often enough.

    Or how stupid you feel when the nurses clap their hands and exclaim at you when you poop, as if you’re a toddler.

    Or how awkward you feel when they accidentally send in a chaplain to talk to you–at all–especially when you’re on pain meds and muscle relaxants that keep you from having any agency at all, even if your brain screams at you to assert yourself.

    Or how you will plan on doing constructive things in hospital, when all you can manage is tv.

    Can you guess how much I loathe being in the hospital?

    1. Yep, all of that. I wrote this while in the hospital a few days ago & the frustrating thing was that my doctor told me to go get admitted, then when I showed up, they didn’t do anything for me & basically sent me home after a day, with a medication I’ve taken before that does nothing (which I told them). They talk to me like I don’t understand what’s going on when I completely do.

      1. Wow, that does not sound good. Have you thought about changing your doctor? (or, to be more exact, get your GP to find a different specialist?)

        I can totally relate to your story, (albeit with different medical problems),even though I usually get good treatment because my wife is a GP, sometimes things go off the rails and I have heard some dreadful horror stories.
        Even doctors with the best intentions can get a bit too “heroic” at times, for instance there is a surgeon that seems hell bent on ripping out my spleen right now – no way, sometimes you have to draw the line!
        In your case, what you are talking about is the opposite of heroic, they seem a bit lackadaisical, maybe somebody different would be a bit more proactive on your behalf? I would have thought a good specialist would visit you in hospital for instance, just to check up on how things are going.

          1. Sorry! I have no idea how comment moderation works around here, sometimes I think it just randomly throws things into moderation. :) Fixed now!

          2. Yeah, I can relate. My best luck is with docs who have the condition because they don’t have the I Know All, Who Are You To Question complex that docs who don’t have my condition take. But that’s something you can only luck into.

            I’m a bit of an asthma zebra – I’m an athlete, so even though I’m a moderate asthmatic, my baseline lung function is about 160% of normal for my height and weight. Unfortunately, that means when I’m sick, I look “normal” to docs who don’t realize that you measure asthma relative to baseline, not relative to predicted, when baseline numbers are known. Which is damn near all of the non-specialists. When I look sick to those docs, I’m having a serious flare. When I look like I’m having a serious flare, I’m having a life-threatening one. Not fun.

            Stuff they don’t tell you when you’re diagnosed with asthma:
            *When they say “If your inhaler isn’t helping, go to ER,” what they mean is “if your inhaler isn’t helping and your numbers are in the crapper, go to the ER. Otherwise, tough it out till morning because if you go to ER, you’ll have a resident condescend to you about anxiety attacks.”
            *There’s a catch-22. If you wait till you’re in the crapper breathing-wise, they’ll yell at you for waiting so long. if you come in before you get into the crapper but you know you’re going to the crapper, they’ll treat you as an anxiety case and ask why you’re bothering them.
            *If your baseline is outside of normal range, carry an ER introduction letter from your doc. They probably won’t even glance at it, but it might make them take you seriously when you explain about your baseline being outside normal and that they have to adjust accordingly.
            *Bring YOUR peak flow meter to the ER. Different peak flow meters read differently.
            *You’ll have to explain to your doctor what an action plan is, why it’s important and that it’s associated with improved asthma outcomes for a year before they finally try it because they don’t think you, an asthmatic, is capable of recognizing an asthma flareup and treating it appropriately without professional input.
            *You feel like shit if your coughing wakes everyone else in the house up, even if you can’t help it.
            *You can’t explain that the reason you want your own room when visiting a place with a lot of triggers isn’t because you hate children, but rather so that when you wake up at 3AM with a coughing fit, you don’t terrify the child by sounding like crap
            *Peak flow numbers are full of crap, as they don’t measure small airway inflammation and technique can confound the result to a huge degree
            *Peak flow numbers are the only thing most doctors care about.

        1. The problem is not that he’s not a good specialist…the problem is that he’s the best (at least in this city), which means it takes 3-4 months to get an appointment to see him & that he usually doesn’t have time to visit patients when they’re in the hospital. All the doctors who came in to see me were on my doctor’s team.

          Shortly after I wrote that comment, his nurse called me to ask how I was doing, I mentioned that I had already been on this med before & it did nothing, so she talked to him & they sent a new prescription to my pharmacy. So things are looking up?

  2. Interestingly I believe it was on Futurity or Slashdot I ran across an article. A study out of Israel has found consumption/inhalation of cannabis puts Crohn’s into remission. So hopefully a clinical solution will be available for you sooner than later.

    1. I remember seeing that. I’ve emailed my senators & representatives and told them my story and asked for them to vote in favor of legalization. I live in Ohio & Michigan is right above us & they have it legalized, so I’m hoping it happens here soon.

  3. I just got home from having my every 8 weeks Remicade infusion for Crohn’s myself, and I second most of this. The worst part is just the absurd amount of time I either spend taking naps or just lying around because I don’t have the energy to do anything. People around you sort of understand it at first, but they seem confused by the “chronic” part and start getting annoyed when you’re always asleep. I live in Massachusetts to the insurance system is somewhat better here, but there have certainly been years that I got way sicker than I needed to because I couldn’t afford doctors. Now it’s just have to juggle various bureaucratic things to make sure I’m covered for my every 8 weeks infusions, as they lose effectiveness if you ever miss any.

    As for doctor’s (and relatives) dismissing your concerns, this happens surprisingly often. I first started getting bad symptoms when I was 11 or 12, and it took a couple years before any of the doctors in my primary care office took me seriously enough to send me to a GI doc. They kept telling me it was just a stomach bug even though I weighed something like 70 pounds in the 8th grade. Relatives were worse, as they insisted to me (and my parents) that I would be fine if I would just eat more, and that my feeling sick immediately after eating essentially anything was just me being fussy instead of just sucking it up and eating. Thankfully I’m with a great group of doctors and nurses now that know what they’re doing and take the time to talk to me about anything that’s concerning me. It’s sad how rare that is to find.

    1. Is the Remicade working for you? I was on it earlier this year but it lost effectiveness within a few months, so now I’m on Humira & just started Imuran. I was so annoyed though because I know people who’ve been on Remicade for 10 years & it hasn’t lost any effectiveness at all for them, so of COURSE it stopped working for me within 4 months.

      I was talking to an old friend the other day, who knew me when I first started showing symptoms, and she mentioned how weird it is to see me enjoying food now, because when I was 15, I only ate 2 or 3 different meals because so many foods were painful, and I didn’t want to risk trying new foods for fear that they would also be painful. I went vegan within 2 weeks of finding out I have Crohn’s, and that combination has led me to FINALLY being able to enjoy food.

  4. I can totally relate to everything you said. It’s always nice knowing there are others who really understand what you are going through. I have Psoriatic Arthritis, Sjogren’s, Spondyloarthropathy, Microscopic Colitis, and psoriasis. It took years to get diagnosed after suffering from tons of testing.

  5. I can certainly relate, by far the best information we have ever received regarding anything post diagnosis life, is via support groups. Doctors generally don’t have much information other than the odd pamphlet in the waiting room.

  6. This is the sort of thing that pushes people into the arms of quacks! Especially those with chronic illness. I don’t blame people who prefer to see a compassionate chiropractor over a condescending physician, until they’ve been educated on the risks that come with the quack’s compassion.

    In fairness to some of the physicians, it can be hard to distinguish at times between chronic physical illness, mental illness, and drug seeking behaviors. But since all three things exist and are legitimate medical problems, non of these people should be ignored.

    1. I feel I must clarify–Sarah, you are obviously suffering from a real, serious illness. The exhausted on-call resident might miss that in a haze of patients falling into the other two categories. Unsurprising, but still a terrible shame and unfair to you!

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