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.