We’re Not Looking for a Pat on the Head

When you ask a chronic illness patient if he or she feels understood, the likely answer will be no. It isn’t just being misunderstood, but patients also feel like others are just patting them on the head. We feel patronized, belittled, pitied. We’re often accused of “faking it.” Unless you experience the pain that we feel, you probably won’t understand. To be fair, we shouldn’t expect you to understand… but what we would like is for others to accept that what we feel is very real and very difficult to deal with. Here are some things we wish you knew. That includes doctors, nurses, “support organizations”, family, friends and anyone else who claims to care about our well-being.

1) We are not looking for a pat on the head. So stop it!

Stop patronizing us. Stop looking down on us and stop giving us pity. We don’t want your pity. We want you to understand that we are hurting. Daily we fight just to attempt to look, feel and act normal. We aren’t just trying to feel normal though. We also battle our own bodies that wreak havoc every second of every day. Pharmacies are another battle. Oftentimes getting our medications on time and getting our health insurance on the same page as the pharmacies is another battle. Many of us have doctors who don’t understand–doctors who are supposed to specialize in the human digestive tract. It’s exhausting.

2) Stop accusing us of faking it.

Ok, so maybe we are faking feeling well. We have to do this to survive and work and socialize. But we are NOT faking being sick. What we feel is very real and oftentimes VERY painful. It’s difficult for someone to understand what we go through unless they’ve been through it or something similar. I know because I’ve been there. But just because you don’t fully understand it doesn’t mean it isn’t real. Just because we can work while we’re sick, doesn’t mean we’re not ill. At the end of a long and busy workday, many of us curl up in our beds, not daring to even move. Why else do you think we skip out on fun group activities? We aren’t anti-social. We’re sick.

3) To the doctors, please start taking us seriously! And get your act together.

Point number three isn’t aimed at all doctors. I’ll admit there are so many good doctors out there… and I can name a few… but some of you don’t have a clue and it drives us insane. I can’t tell you how many bad doctor stories I’ve heard. I have a few of my own.

Admit you don’t know everything!

My first GI told me at diagnosis that in two years’ time, I’d know more about my disease than she did. Ok, fine, good, she admitted it (some GIs won’t), but if that is the case, how about you refer us to someone who is an actual expert in the disease that is trying to kill us? Instead, what you’re doing is throwing us back out into the world full of scary and incorrect information leaving us to figure things out for ourselves.

Bleeding is NOT normal…

I had another GI tell me after a digital rectal exam that because he didn’t find any blood during that exam, that I wasn’t bleeding. Um… I’m not here in your office because I’m imagining things! You can’t tell me that I’m not bleeding when every bowel movement I have produces large amounts of blood in the toilet. I even told him that I see blood in the toilet and do you know what he said? “Oh, that’s normal with ulcerative colitis. You’re fine.” No sir, I’m not. And saying that to me makes me keep things from you… like the time I pooped my pants. Yeah. That happened and I’m not telling you because I no longer trust you and your ability to treat me.

Stop talking down your nose at me.

In another instance, I was admitted to the hospital after two trips to the ER because I couldn’t keep a sip of water down and I would throw up every time I had a very painful bowel movement. The next day, my GI came in with his nose literally in the air and looking down at me through his spectacles and he said, “Why are you here?”

Uh… I don’t know, Doc… you tell me! Ok, I may not have gone to medical school to study the GI tract, and I won’t pretend to know everything. But don’t belittle me or my health. I’m not ok and the treatments you’re giving me aren’t working. It isn’t my fault. STOP looking down on me. Again, if you’re not an expert in my disease, please refer me to someone who is.

4) Stop giving us dietary advice.

We know you’re just trying to help, but before you tell us how to eat, please ask us what treatments (medicinal and natural) that we’ve tried. Chances are, if we’ve had the disease for any length of time we’ve probably tried several diets. Some of them didn’t work at all while others made things worse. Ok, so your sister’s friend’s brother’s cousin tried a certain diet for his chronic illness and it helped him… but that doesn’t mean it will work for everyone. Our bodies are different and so are our diseases. We aren’t stupid. We aren’t trying to fight you. We’re just tired of all the medical advice.

5) Try a little compassion, please.

Again, we aren’t looking for pity. We realize you may never understand what we go through… and ok, fine. But please, at least give us a little compassion instead of doubting our pain. Don’t hold us in contempt. Love us through our illness. We can’t help that we have an autoimmune disease that is determined to destroy any semblance of a normal life. We aren’t bad friends. Our guts hate us. We aren’t lazy and it isn’t “nice” having to miss so much work or school. We aren’t playing hooky. Our chronic illness is making it difficult to live a normal life.

Conclusion:

Before judging us, take a good look at what’s really going on. Try to put yourself in our shoes. We want compassion without patronization. We want understanding without pity. Listen to us. The pain we feel is very real, scary and frustrating. Love us for who we are instead of resenting us for what our diseases make us do.