Monday, November 12, 2012

Let's Talk About Chronic Illnesses!

So, as most of you know, I was recently diagnosed with Crohn's disease. There are a lot of misconceptions, well-intentioned but harmful comments and behaviors, and other things not to do or say to someone with a chronic illness. So, let's go over some, shall we? (Of course, I don't speak for every person with a chronic illness, as they are all different and people are all different. If someone else with a chronic illness has other thoughts, feel free to add them to the comments and I can adjust this post.)

1) Being diagnosed ≠ when you got the disease. I was diagnosed with Crohn's in May of 2012. I had surgery for it in August of 2012. Many people have said to me, "But if you got it in May, why are you having surgery so soon?" Fun fact: I didn't get Crohn's disease in May. I've had it for years (possibly my whole life). I just couldn't afford to go to a specialist to get diagnosed until I was 23. I remember when I was 15, going back and back and back to my family doctor, who just insisted that I take laxatives every day (which didn't really help). Then I remember having a flare up my first week back to college sophomore year, and the hospital told me I probably had ovarian cancer (????), then ran a test and saw that I didn't, then released me 5 hours later when I stopped vomiting. Top notch care, that is. By the time I did get diagnosed, permanent damage had been done and less invasive treatments weren't working, so surgery was my most viable option. But on that subject...

2) You do not own or control my body. Why do people (especially acquaintances/strangers) seem to think they get to have a say in my treatment? "You know surgery is permanent, right?" Whaaaat?! You mean I won't just regenerate 10" of my small bowel?? I had no idea! Thank you, stranger, for letting me know the risks of a surgery that you've never performed and have no experience with. Same goes for medications or other treatments. "That pill is really harsh on your body, are you sure you want to be taking it?" If a doctor has prescribed me a medication or treatment, and I've agreed to it, it means the benefits of it will outweigh the harm (barring something major or unpredictable, like an allergic reaction). If you want to sympathize with me, that's fine.

"Oh, you're on prednisone? That's rough, I was on it a few years ago and I hated it. I'm sorry you have to deal with that." = Nice and supportive.

"Oh, you're on prednisone? You know it causes [x] side effect, right? You should have your doctor put you on something else." = Not okay.

3) Praying for me is okay. I won't be mad if you say that you're doing that, even if I don't believe that prayer does anything. But know what's better? Offering to help me. Don't be pushy, because sometimes there's not really anything you can do, but there definitely are times when you can help. My partner Sean has been incredibly wonderful and supportive (click here if you want to see another entry about how disgustingly cute we are), but he obviously can't be there for me every minute of every day. If you offer to do things for me, like drive me to a doctor's appointment on a day when I can't drive, or to pick up medication from the store for me (or even littler things, like a snack or a book from the library), that is really touching. I may never take you up on the offer (for whatever reason), but simply offering to do that does make me feel like I have a strong support system.

Don't live close enough to me to do that? Little things help as well. Email me some cute pictures of animals, or play silly little games with me (like Words with Friends). Send me a letter  or a nice email. Recommend books or TV shows to watch. Or something. Just letting me know you're thinking of me helps. However...

4) Don't be mad when I can't do things or don't respond. I read all the messages you send me, I promise. I just don't always have the energy to respond. To you, it may not seem like a lot of effort, but when you only have a few spoons left in your daily energy level, everything seems much more difficult. It's nothing personal, I promise.

On that vein, if you invite me out to do things, and it seems like I'm always saying no...I'm sorry. Again, don't take it personally, I just don't always feel capable of going out. Same goes for if I agree to do something, and then flake out later. I probably feel awful about it, but it's just not possible sometimes.

5) "But you're well enough to do x, why can't you do y?" Some people think that if I'm able to play video games or tweet or update Facebook, I should be well enough to do...I don't know, anything else. This is not always the case. Guess what, I can do almost all of those things from my bed or the bathroom. Or if I am capable of playing Lord of the Rings Online (which you should download; play on Silverlode and I'll send you my character name and we can be buddies), can't I go do something else? Turns out, I can play video games just fine if I'm on heavy painkillers. It doesn't mean I can go drive a car or go out to dinner or hang out with you otherwise.

6) "Are you addicted to painkillers?" / "Wow, I wouldn't want to be on such heavy drugs for such a long time!" Cool, well when you have a painful chronic illness, you can deal with it in your own way. If you choose to abstain from painkillers, great, good for you. That doesn't make me a bad person for needing them. 

7) Respect my privacy. I don't always want to talk about it. I don't always want to tell you all the intimate details of my bodily happenings. I'm a fairly open person, but sometimes, I just really don't want to talk about it. If I say I'm not feeling great, you ask for details, and I'm vague, don't push it. If you do push it (or even if you just ask), and I say something like, "Yep, it basically feels like there's lava coming out of my butthole," don't get mad at me for grossing you out. You asked. (Also, you think it's gross hearing about it? Try living with it.)

(PS, anyone who say it's "unladylike" or something to talk about "gross" things like my bowel movements can fuck right off, for several reasons.)

8) "I have [temporary minor condition]. I totally know what you're going through." This one might be the one that makes my blood boil the most. Oh, wow, you get diarrhea on occasion, just like every other person on the planet? Gosh, you must know exactly what it's like being me! How about that time you had to go the doctor every single week for several months for invasive, painful, and annoying tests? And what about that medication you had to be on that caused suicidal thoughts? And how did you deal with that time that your incision site from your major surgery got infected and your doctor had to cut open your stitches and drain out the pus before your pain meds even kicked in? Oh, you mean you just took some Pepto-Bismol and you were fine a few hours later? Yeah, those things are totally comparable, good call.

(By the way, all actual things that have happened to me in the past ~6 months.)

9) "My family member had that, and they're fine now. Why aren't you?" Wow, I wonder if it has anything to do with the fact that people's bodies are different and illnesses present differently in different people? Think about all the people you know who've had cancer. Probably some have survived and some have not. Have you ever gone to a funeral of someone who died from cancer and said, "Well my aunt survived breast cancer; why did your mom die from it?" 

10) "Have you seen a doctor?" / "Why didn't you go to a doctor sooner?" To remind you, you don't own my body. Secondly, do you know how expensive doctors are? I couldn't afford to see specialists until almost a year after being employed and on my own insurance. Even now, if I didn't have a partner who had a good income, I would not be able to afford treatments. Every time I go to the doctor, my copay is $50 because I'm seeing specialists (even after I've met my deductible), not to mention the pay I lose from being out of work for weeks at a time. Oh, and add on top of that all of my prescriptions. It's classist to assume everyone can afford seeing a doctor regularly when they are expensive as fuck. It's not like when you have a virus and can stop by the doctor, get some medicine, and bam, you're done. It's a constant process.

But also, yes, I have seen a doctor (many, in fact). Not that it is really any of your business.

11) Have you tried X therapy? I haven't used it, but this totally-not-sketchy website said it's great!" Ulghsldkghsdlgkhdslhgsdlghsd. Why do people think that an article they once saw on is the same thing as actual advice from a medical professional? 

There is a caveat to this, being: if you have the same disease as I do and there's a treatment you tried & liked, you can suggest it to me. However, this does not mean a) you can be pushy about it or b) that it will automatically work for me. Just saying, "Oh, have you heard about this new treatment where they put fucking gross parasitic worms inside your body to help cure your disease? My doc recommended it and it helped me a lot." is good enough. You don't have to tell me to do it, because I'll probably look into and talk to my doctor about it. We can talk about stuff, you don't need to try to guilt me into it. Mainly because...

12) YOU ARE NOT A DOCTOR. And if you are, you aren't MY doctor. I know you have good intentions, but stop. Just stop.

13) Suggest I eat more veggies / exercise more / sleep more. You know what, you're absolutely right. If I just eat more organic vegetables, work out 30 minutes a day, and get 8 hours of rest a night, my autoimmune disease will just disappear!! Golly, why didn't I think of that before?! You are a genius and have solved all of my issues, congratulations! Have this cookie

14) Let me be scared. It isn't your life on the line. Encourage me, support me, but don't tell 
me to "not worry." That is literally the least helpful thing you can say to me. Try saying instead, "Your doctors are very competent, but I can understand why you'd be scared. If there's anything I can do, let me know."

This list was originally going to be much shorter, but I tweeted about my rage and a few other people with chronic illnesses chipped in, and so I added a few more things. If you have a chronic illness, please feel free add your thoughts.

And remember, I don't speak for all people with illnesses. This is just me, and if other people with long-term medical issues relate, feel free to share it.

Edit: I wrote this with physical ailments in mind, but I think a lot of it can apply to people with mental illnesses as well. Just because an illness is invisible doesn't make it any less real, folks.


  1. I will be the first person to NOT pretend I know what it's like to feel like there is lava coming out of my butthole.

    But I do understand what it's like to have people say really unhelpful things about a chronic illness. In May, I was diagnosed with multiple sclerosis, and there are several things I am sick of people saying. The "why didn't you go to a doctor sooner" thing pisses me off the most, because I am uninsured and I do not go to the ER unless something really terrible happens. The other one that gets to me is "you don't look sick." So because I am not in a wheelchair with no control of my bodily functions, I don't really have MS? What horseshit.

    While I do not understand Crohn's, I do understand your frustration. And I promise not to say anything shitty about it. (Pardon the pun, I had to.)

    (Oh, and prednisone totally does suck. I have to take it during MS relapses. Worst drug ever.)

    1. I can't believe I forgot "but you don't look sick!!" That's a really good (read as: awful) one.

      Also, poop puns are totally okay. They help me get through rough days. :)

      And yeah, prednisone. Hate living with it, can't live without it.

  2. Best thing I've read in a while.

    As someone who is technically undiagnosed with fibromyalgia (and possibly rheumatoid arthritis) I hate the doctor ones the most. When I did have a good job, I couldn't afford insurance because I was taking care of my mom. Now that I'm too disabled to work anymore, I'm having a hell of a time getting on disability (or housing or anything else that can help me) because I couldn't afford to see a doctor before. I'd *love* to see a doctor. As soon as someone can point me toward a free clinic that I don't need to anger my disability for (getting up at 3 AM? Makes me hurt more for the entire day) then I'll be the first in line.

    Disability, mental or physical and of any severity, really compounds class issues. I imagine it also compounds issues with race and gender as well. On top of all of that, just as you've pointed out with the article, our communities frequently belittle us without realizing they're doing it and it can be exhausting to our already limited supply of energy and focus.

    Thanks for being upfront about everything, it's inspiring to someone who doesn't have a platform like you to make the world a better place.

  3. As friend to three persons that have chronic illnesses (Sickle cell, RA, and cystic fibrosis), this was good to read.

    And the whole invisibility of mental illness ( "you don't look sick"), yeah, it sucks. "Your life isn't that bad. Why are you sad? Just be happy." OMG STFU.

    To add to all that, I always have to remind other people MEDICINE is fine line between art and science. There is a lot of hit or miss diagnoses and treatments. Everyone is different. And not all doctors get it right the first time. I'd say most of the time most of them are going to get it wrong.

    Oh, and a helpful tidbit, keep a copy of all your medical records. When treatments/therapy last forever, it's hard to remember when you tried X drug or had X surgery or saw X specialist.

    Thank you for listing the first misconception, I thought the same thing when you were having surgery. I was like "damn, that was fast."

  4. I love that you have taken your experiences, very thoroughly put together the ethnography, and created this excellent primer for everyone to learn from. Thank you.

  5. I think the big problem is that people don't want to accept what is happening to you. They want to maintain their denial.

  6. I have good days. When I do, it's nice to be able to pretend to be normal. It's nice to have a rest from being defective. Also, as much as you might need to know about my health in order to keep from making the world shittier for me, my health is still very much a personal matter.

    Long story short, don't treat talking about my condition the way you would talking about the weather. It isn't there to be a default conversation topic.

  7. My wife has been disabled for over 20 years and people still act as though something Dr. Oz said on TV is relevant to her treatment, which they are happy to advise about. Everyone is an expert on chronic illnesses because they read about it online. Just like Jenny McCarthy.

  8. You know what drives me up the wall when one or more of my bazillion distinct causes of depression kicks in? (I have genetic major depression, PMDD, SAD, occasionally medication side effects, and I tend to get mopey from ADHD. All diagnosed by more than one psychiatrist incidentally. Self diagnosers get on my nerves.)

    "Oh don't feel suicidal because kittens! Every time you feel suicidal god kills a kitten."


    Feeling suicidal isn't something that I control, and it's certainly not something that I can just snap out of. I am quite aware of the existence of juvenile carnivorans BUT THAT ISN'T A MEDICAL TREATMENT. It's way more helpful to have people give me support, ("aww *virtual hugs* I hope you feel better"), reassurance ("you'll feel better in a few days, once your hormones go back to normal"), rationality ("you've felt like this before and you've gotten through it and had happy times, so don't think you'll never be happy again"), distractions ("look, I downloaded this new dinosaur game on my tablet, wanna try it?") and chocolate. Although I doubt chocolate would help your guts.

    I do hope you feel better. Lava shit is very unpleasant. My words with friends username is salanaland, I think. It might be aurorasales.

  9. So glad I live in Canada. I still have to pay for half my meds, including Humera shots, but I never have to worry about doctor or hospital bills.

  10. Found your blog via science blogs and tweeted your post. Very well written, and I can identify with so many of the items on your list.

    I think the two I identify with most strongly are "5) "But you're well enough to do x, why can't you do y?" and "8) "I have [temporary minor condition]. I totally know what you're going through." 5 also applies to me on a day to day or week to week basis because sometimes I can do x or y, and sometimes I can't - my condition fluctuates and makes it difficult to plan and cross off to-do lists. 8 is high on my annoyance list, as after I've made a statement about how tired I am to someone in particular (and I am tired between the grinding fatigue I wake up with normally plus the fatigue that comes from being in the ER with pain at 2 am and not sleeping for more than a few hours) that they have to tell me something on the order of, "Tired? Oh, you aren't alone, I am always tired after a long day at work". Which ties into the dig of how if you are disabled and not working, of course you must not have a reason to be fatigued and tired, right?

  11. I, too, found this by way of Science Blogs....& can also totally relate to what you (all of you here) are feeling. 11yrs ago I was at work (Paramedic) & was assaulted by a drunk who had been in a car accident and apparently didn't like that I was trying to take care of him. That was the 1st "popping" sensation, & as I'd later find out, the beginning of the 'domino effect' breakdown & deterioration (both) of my spine. 2yrs later-in 2004, again at work & again on a car accident call, I was running from the ambulance to get to my patients when I slipped on the snow/ice & fell. "Pop" #2. Two years after that (off duty this time) I was lopping off some scraggly tops on the bushes in front of our cabin-I couldn't reach the few on the tops of them so I went inside & figured I'd get them by just leaning/reaching out the window. Big mistake-I couldn't straighten up or get back in the window. That was the 3rd "pop" in my spine...& what would be the end of my career & life as I knew it. At that time I had just the 3 herniated lumbar discs, or so I thought. By this point my primary Dr had sent me to a Pain Management Doc who naturally ordered up a full spine MRI which showed that lurking inside of me was what they believe to be some sort of hereditary condition ("the curse" as I call it) where my spine is literally deteriorating from neck to tailbone. Since that 3rd injury in 2006 I have accumulated 5 more bulging & herniated discs, mainly from falls related to the nerve issues, adding to the Degenerative Disc Disease, Degenerative Joint Disease (almost all of my facet & sacroiliac joints are jacked), Osteoarthritis throughout my spine, Sciatica, Failed Fusion Syndrome (had 2 back surgeries 3 days apart-L2-S1-in 2010), my entire left leg from hip to toes "asleep" permanently, & due to the trauma (so they tell me) I developed Fibromyalgia to top it all off.

    So basically I go in every 3-4mos or so & get Caudal epidural & Bilateral SI joint steroid injections & live my life on Morphine, Soma, Roxicodone & Lyrica. I spend a good 85% of my existence in bed (because lets face it...this is not "living"-it's merely existing) with pain ranging from 7-10+ on the "pain scale" constantly.

    Oh-and I can completely sympathize with your Crohn's too as they thought I had it too (blood work ruled it out I guess) but deemed it to be basically just relentless IBS, complete with the lava shit.

    The whole "But you don't LOOK sick!" thing, quite frankly, pisses me off! Just because I choose to put on my brave face & smile at strangers definitely does not mean I'm not hurting-it means I don't see the need to be a bitch to others just because I'm in pain. It's called respect. Same reason I don't post as my FB or Twitter status that I hurt again today. It's a given & I just don't feel it necessary to 'air my dirty laundry' publicly like that. I can't stand it when my FB newsfeed is full of people who never do anything but bitch, so why should I be like them and add to it, ya know?

    Have you ever read the "Letter To Normals From A Chronic Pain Person" before? If not-Google "Letter To Normals" & you'll find links. In fact one of the first you'll see should be at a website called Spine-Health (one of my online "hang out spots"). It's really good-basically describes VERY WELL I might add what we go through on a daily basis-very similar to what you've done here. I hope you'll give it a look.

  12. I read this article when you first posted (found it via Greg's site) and wanted to post, but I wasn't feeling up to it then, and now I am. I'm late to the party, but I want to thank you for writing this post. I don't have chronic physical sickness, but a genetic mental illness, and the well-wishers are definitely frustrating sometimes.

    I once had a family member tell me to just take large doses of Vitamin D to up my mood. I've gotten the 'just exercise' speeches, and those are frustrating because when my energy and mood is so low I literally can't do anything, feeling like I 'should' exercise makes me feel worse. I know that exercise is good. Since when did I NOT know exercise is good?

    Telling me to cheer up is like a kick in the face. I wholeheartedly agree with you that it's much more helpful for someone to offer to help out or just tell me they are there for me if I need anything. I do feel bad if I can't go out, or I end up flaking. The people most understanding are friends I know that actually have mental illnesses and know that sometimes we just have days where we can't face the world, or even a friend. So text me. I like texting conversations. I don't even have to use my voice.

    Also, sometimes when I am excited that I improved, I'll tell someone close to me, and they trump it with "well I do that all the time," or they just brush it off, flat-lining my joy. THAT is really a downer. If you want to be my friend and be supportive, be happy for me when I succeed, because those little things are BIG.

    The "I'm praying for you" bit is actually annoying to me. I know it's meant well, but I get it from my family and they don't do much else than that. I would prefer to have someone to talk to if I need it, and it feels like when they say that they are saying "shut up, it's covered, I'm tired of hearing about it, because the sky-fairy will help you, not me." My mom always used to say "Take it to the Lord, he will listen to you." To me it feels like they are passing the buck instead of really offering to help or caring. Well guess what. I get to deal with this on a daily basis, and it's the meds and therapy that are stabilizing me. I just want a friend, and like you said, let me be scared, because I am scared.

    What I appreciate about your post is that it has helped me to be more ok about allowing myself to do what I can do, instead of feeling completely overwhelmed and drained because I can't do what everyone thinks I should be doing. So thank you.

    ps. It's me, Kat, twitterbro and LOTRO buddy.

  13. I read this blog twice and i think that most of the people are not aware of Chronic Illness Treatment. I think the problem is that people don't want to accept what is happening to you. They want to maintain their denial. Thanks for sharing the information on chronic illness.