How people with chronic illness REALLY feel about your “advice”


I have eczema. I have had it all my life. At this point, my life has lasted for 23 years, which means that I have been living with and treating eczema for 23 years.

Somehow, though, it doesn’t stop people, some of whom are complete strangers, from treating me like a total idiot and giving me stupid advice.

“Joanna, just do you know, you have a bit of a rash on your neck/face/insert body part here.”

Thank you, Captain Obvious. I had NO IDEA between the itching, pain, oozing, burning, and cosmetic disfigurement that I had a rash there.

“Joanna, be careful. It looks like your eczema is coming back!”

My eczema isn’t coming back, douchebag. It’s been here all this time. It’s a CHRONIC, CONGENITAL condition.

Never mind that many patients with eczema struggle with disfigurement, especially on the face and neck. I don’t BELIEVE I have to explain this, but it’s RUDE to point that stuff out to people. Patients are self-conscious as it is without total strangers constantly pointing it out. Jesus Christ.

“Why don’t you try [insert popular OTC remedy here]?”

Gee, why didn’t I think of that? Maybe I’m already using it. Maybe I’ve tried it and it’s not strong enough.

“Oh, that looks painful/itchy/insert adjective here!”

Um, thanks for pointing that out. I totally wouldn’t have realized that I’m supposed to be scratching if you didn’t tell me.

“Don’t scratch!”

Easier said than done, asshole. YOU try it. YOU see how long you can go without scratching.

What makes these recommendations so f****** annoying? One is that you get these unsolicited concern troll attacks from multiple people multiple times a day. No one wants to hear the same shit over and over again. And I really, really hate it when I’m TALKING to someone, or am in the middle of doing something else, and they INTERRUPT me to tell me this random dumb-ass shit about my eczema that I have known for years.

Another thing is, like I said earlier, they assume that you’re a moron and or a child, instead of the adult that you are. No one wants to be treated like that.

The last thing is that, to add insult to injury, people are doing this nannying while displaying a laughable degree of ignorance. My all-time favorite recommendation was that I take Benadryl to cure a massive eczema flare-up.

Um, Benadryl is a cheap, OTC medication with which I am very familiar, thanks. I don’t need a special recommendation from you to use it. And by the way? Benadryl was designed to treat hay fever (although it does have other uses). While it can be used to help patients sleep during flare-ups, Benadryl does not treat eczema. And for patients with severe eczema, taking Benadryl is like shooting BBs at a grizzly. Doesn’t work.

Seriously? I have eczema severe enough to land me in the hospital and this person is telling me to take Benadryl? Really?

Somehow, it’s even more irritating when family does it. This is partly because many family members feel entitled to be enmeshed busybodies when it comes to other family members. So they take your chronic condition and use it as an excuse to do what they do best…be a enmeshed busybody. I especially like the family members that are drama queens.

Even run-of-the-mill concern from family members is irritating because they KNOW you and they know your eczema. They should know what your tolerance level is. They should know how your eczema behaves, when to get concerned and when to STFU.

I very often have flare-ups that I totally ignore because they don’t bother me, but when other people look at them, they assume said flare-ups must be very painful, itchy, etc. I tell them that they are not. Flare-ups are part of the condition and you get used to a lot of the symptoms. You cannot prevent them all the time and it’s not always worthwhile to prevent them all the time. You have to be super vigilant multiple times a day to prevent flare-ups, and even then, it’s not 100% effective. So I often go lax on skin care regimens partly because of cost and time, to be honest, but also because, well, I have a life. I follow basic skin care advice and have an “action plan” for when flare-ups arise and usually, it works for me. I’m an adult and, believe it or not, I know what’s happening to my own body and how to live inside of it.

And even if I didn’t? It’s still none of your business! It’s my body and not yours! No, I don’t give a rat’s ass that you’re a family member! It’s NOT that hard to keep silent. All you have to do is…say nothing! Keep your mouth shut! The way you would with any other adult you knew, dickhead.

People suck. And having a chronic condition is a great way to learn just how much people suck.

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4 comments

  1. Patsy Nevins · October 15, 2012

    I can empathize, Joanna. It is the same when you have a disability of any kind, at least any which is visible. I have gotten asked so many times over the course of my life what is ‘wrong’ with me (what is wrong with YOU, asshole, for asking such a rude question of a perfect stranger?), or if I have hurt myself, & a million variations on those themes. It doesn’t happen as much now as it did when I was younger, perhaps because many of the people I encounter have seen me in stores or passed me on the street multiple times even if we know each other, or maybe because I am getting older & a lot of people EXPECT people to develop chronic conditions/pain/some kind of disability as they age…though I am NOT 90 yet & I look as if I am in my early 40’s. Of course, it could be that a lot of people I encounter have some manners & some tact. It could also be because I am fat & it is amazing how many people believe that fat automatically means disabled, when in fact, no, they are not the same thing; yes, I am fat & disabled, but I have been disabled since birth, & the vast majority of fat people are NOT disabled & a great many disabled people are not fat. At least I haven’t yet been hit with the “if you lost some weight, you’d be able to walk normally’ bullshit which I know a lot of people get, but I am ready if I do..”actually, no, I could not walk ‘normally’ when I weighed 30 pounds.”

    I am very sorry that you deal with this, Joanna. I send you positive energy & hugs from a friend. Take care & keep speaking up for yourself.

  2. Pingback: Sizism and Healthism: Some Perspective | closetpuritan
  3. JenC · October 15, 2012

    I’ve had rosecea for decades and I know how irritating it is – I’m constantly told ‘Your face is red! Are you okay?’ I’m fine and I know my face is red, thanks. ‘Are you having an allergic reaction?’ No, Kthanxbai. ‘You need to stay out the sun, you got sunburned!’ No, I didn’t. This is my face out of the sun. ‘Have you tried X, Y, Z treatment?’ Yes, thanks, they all seem to make the condition worse or have side effects I can’t tolerate. What bothers me most is when you actually give someone a realistic response [meaning one that conveys some facts and learning to them] they become offended. The only proper response, in most people’s minds, is to quietly agree with their unsolicited medical assessment and thank them for their useless advice.

  4. kprofou · October 16, 2012

    I have severe psoriasis and I have gotten so much unsolicited advice, some of which is downright offensive. I think the “don’t scratch” advice is the most annoying and frequent. I also got a lot advice about changing my diet and other lifestyle suggestions to minimize flare ups. One of the most upsetting thing that happened to me is when someone came up to me in the grocery store and told me if I showered regularly, I wouldn’t have this condition; my hair was still wet from that morning’s shower for heaven’s sake. I also had an older Indian woman start yelling and pointing at me at the doctor’s office, which was quite upsetting.

    Jen, I also have rosecea and I’ll turn bright red the second I start exercising and people will tell me to slow down or that if I lost weight, I wouldn’t turn red when I exercised. The same thing happens to my mom, who’s thin, and she never gets shamed for her red face. (I also turn instantly red when I drink, so exercise isn’t the only trigger, I just don’t drink that often).

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