Tuesday, October 11, 2011

What NOT to say to someone Chronically Ill......

You look like hell, crap, sh@t, or any other insulting word. You think we don’t see the bags under our eyes when we are brushing our teeth? Or how about every time we walk by the wedding portrait in the hall when we looked lovely, and it stares at us? It reminds us how dreadful our skin looks, and the strange green tint it has taken on....... Maybe how thin we have become or how much weight we have gained? How pale we look? How thin our hair has become? You can think it, but please keep your pie hole shut!

When you have a rare illness most doctors don’t know allot about them. So that leads us as patients to doing a lot of research ourselves. We have to be our own advocates. We read, and study heavy on our illness, or illnesses. We know them well. Most times better than doctors. So unless you know what you are talking about for sure, as in you read a legit medical article, or reputable medical literature don’t talk about our illness as if you know about it. We are used to people NOT knowing. We are used to teaching people. We already have to deal with the frustrations of being misunderstood by the medical community. The last thing we want to do is argue with Aunt Betty Sue at Christmas dinner about something she read in the Flaming Sun. That said we should rub our butt on the curtains at the crack of dawn, and kiss a swan at the same time Holy Mary we would be healed! So if you don’t know can it. If you want to know ask. Questions are okay. However be prepared if we politely say a “not now please” or “can we talk about this later?”. Sometimes we grow sick of talking it. I want people to understand my illness, but it’s not easy to explain. I can’t give the low down in 2 minutes flat. So ya sometimes I’m like crapsiscles not today! I will come back to you though I promise. So please don’t give advice on something you know nothing about.

Never ask how we are just to be polite or because you feel that you have to. Then get annoyed when we discuss our bowel habits. If you don’t want to know don’t ask! Want to be polite say “you are the most purdy person ever!” or “how about that weather?” You can make other small talk without talking about our illness. You don’t want to hear about it then don’t bring it up. Chances are you bring it up.....we are going to talk about it. In very intense, descriptive poop, and to many farts, migraines make boogers come from my nose details.  

Don’t remind us of the things we used to do, that we no longer can’t. That maybe we can’t do as much. Trust me WE KNOW! We don’t need you to remind us. Being ill is hard. It’s like DEATH in the grieving process. We go through all the same emotions, shock, grief, anger, resentment, sadness, and eventually acceptance. You don’t know where we are at what time. Sometimes we slip backwards. Especially if we get a new diagnosis. We are very sensitive to those memories. We miss the old us, just as someone misses someone that has died. So leave that one alone. You want to help? Remind us of the things we can DO. We struggle to get things done. So say you are over for dinner? It took me twice as much energy as a healthy a person to cook it. Please say thank you. It took A LOT out of me to do so.

Don’t remind us of all the things we haven’t got done, or haven’t been doing. Like for me I’m a neat freak with house work. When you are chronically ill you have to divide you energy. Think of a pie graph you made in school. You think of the MOST important things. Then you break it down to the smaller things. So if dishes have to wait at the expense of me playing with my kids. What would you do? Or I have dishes to do, and laundry. I’m semi tired, and the laundry smells worse ding ding laundry wins! So if you come over don’t point out that I have dishes in my sink. Trust me they talk to me in my sleep. I know I have dishes in my sink. You want to be helpful wash them. My sister is a neat freak the same as myself. I appreciate it so much when she comes over, and just sweeps my floor, or washes my dishes. It might take her 10 or 15 minutes, but man it helps me so much! It bugs her as much as it does me, and she knows I don’t do it to be lazy. I was probably tired, or didn’t feel good, or busy pulling kids out of trees, or running them around etc; So don’t judge. Help! If you are around someone’s place a lot you are a good friend or family....so we wouldn’t mind your help. The best help is the help we DON’T have to ask for. When you are sick mentally we usually stay the same as we used to be, but physically we just can’t keep up anymore. So mentally I’m still the same neat freak hate my house a mess Dara, but the now sick me has to prioritize. I have to decide what is most important. When things are real bad someone else has to do it.

Don’t exaggerate an injury, pain, or illness. Especially if it has similarities to our chronic illness. As I said before we do a lot of research.....Also we are frequent flyers in the hospital, the doctor office, and the lab. We know the procedures well. We have had probes where no probes should have gone so save your self the embarrassment. We see through the little white lies. Just say it hurts like hell, or I’m sick as F! Or I don’t feel well. People with chronic illness tend to play down our illness so when you wanna play it up we are just shaken off our rocker a bit. When you tell us an injury is so bad you crawled to the bathroom, we think ya okay you would be in the hospital with a catheter in place by now.....I didn’t even crawl to the bathroom the day after a stroke. These things are hurtful to us, and insulting. Pain, and illness isn’t something that needs one upped. You want attention? Color your hair pink! Or do good things. Come spend time with my family. Help me when I’m at my worse without me asking. Give to the needy. That’s how you get attention, by doing good. Don’t fake an illness, and try to one up mine or any others illness it only pisses us off, and hurts us at the same time. So save the exaggerations for other people please? This hurts us. We have a fight everyday. With EDS we fight dislocations pain, and me POTS, and I gotta fight everyday. It takes a lot to roll out of bed. Even more to walk on an ankle I dislocated yesterday. Even more to smile, and YOU not know, about it. WHY? It’s not your problem. So we don’t want to hear about your sprang ankle took months to heal, and blah blah blah. Just simply say, “it hurt” leave it at that, or you may get coal or a lump of poop for Christmas.


  1. ...like your new blog Dara....you should help many people through it, they will know they are not alone. Mom

  2. I LOVE THIS!!! I was going to tell you my favorite parts, or the bit I related to most.. but the whole thing is my favorite and I totally relate to all of it. LOL. Thanks for writing it so awesomely and honestly!!

  3. Thanks! More rambling to come......:) Going to add more things to the blog soon. Funny things, and some of my poetry. So it's not all sickly only.

  4. Hey whatever you feel you want to post is great! :D I try not to stay too much into boring personal hobbies myself.. but poetry is cool because I'm sure it helps deal with what you/we go through, and that would be amazing to share. Seeing my pets plastered all over an eds blog for no reason other than i like to look at them? Not so much.. lol.

  5. Laugh out loud hilarious! Thank you so much for that. I've got AS and SAPHO, I know I look like crap, even when I have a short remission but your first paragraph was so true. Oh, my head of department told me she has pains too (yeah, really...) and that I should adopt a positive attitude *facepalm* thanks again this made my day!