Painy Days & Mondays - A JOURNEY THROUGH CHRONIC PAIN & ILLNESS

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Painy Days & Mondays - A JOURNEY THROUGH CHRONIC PAIN & ILLNESS

Post by Tee on Sat Jul 09, 2011 10:20 pm

I think we can all relate to this - made me smile Smile

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“You’re getting better!” and Other Lies

JUNE 13, 2011 ⋅ 14

Yes, this idea was totally borrowed/inspired by “You Look Great” and other Lies by Bruce Feiler in The NYT’s last week. I highly recommend you also check out the comments as there are many awesome ideas and thoughts included there.

I’m pretty honest about my illness with my friends & acquaintances. I’ve found that, for the most part, this has been tremendously helpful in managing not only expectations, but in getting help and understanding that I need at times. People who are paying even passing attention are aware I am living with chronic illness and, while I try hard not to bore them all with the details (@painydays is for that stuff), people have been fairly compassionate.

However, sometimes I have to remind myself that I am better off taking a deep breath and saying, “Thank you” then taking of the head of the person who’s said the SAME banal or annoying thing as the previous gabillionity people who said or suggested it.

I’ve been chronically ill my whole life, with something or the other, and I’ve lived in many different towns and dealt with many different people, and have lived with a few folks, all of which had to deal with my illness(es) one way or another, so I am fairly certain I’ve heard it all at some point. What follows is just the highlights.

The one thing I am certain of is that everyone who’s said something that made me want to shake them meant it with good intentions. So, if you, dear lovely reader, have said one of these things, consider it understood that you meant well. I do not blame people for ignorance. However, now that you know, let’s abstain in the future to the best of your ability, shall we? Thank you. And if you slip and say something that is frustrating, I promise to politely & patiently either ignore it or point out why it’s upsetting. Deal?

To follow up, for being a good reader, I will give you a few awesome things you can say to someone who’s chronically ill, that will help them out, as well as some things that might be okay to say. (At least most of them, some people just aren’t the same, so if you have a persnickety friend, think it through.)

What not to say:

“You’re getting better!” This is usually said with a tone that suggests I am “getting over” whatever was wrong with me. I have no idea where this statement comes from. I never have, and maybe I never will. I may be feeling better today, my illness may be under control for now, or I may simply be not talking about it, but I have a chronic illness. I don’t get to “get better.” I just get to get things better under control. There is a difference. Respectfully remember this, and don’t think I’m “getting over” my autoimmune disorder or my fibro. Related: “You look better.” “You look well.” “You look good.”

“But you don’t look sick.”I always want to respond, “I know, isn’t it awesome?” How super lucky I am that right now I don’t look exhausted from pain, my hairs not falling out and I can walk like a normal person! But I am sick. I am. Really really. The doctors even gave me a diagnosis, so it must be real. No one is ever too young, too pretty, or too amazing to not get sick. And while you can’t always see my pain or illness, it’s still very real, and am still experiencing it – every day, every minute. Related: “You’re too young to be ill.”

As an aside, if someone really does look great, tell them! They will be happy to hear it and may have worked hard to look that way. What we’re asking is simply that you don’t assume because they look good that they feel good. (I hope that addresses any confusion on this point.)

“Have you tried…” followed by someone’s idea they heard from their aunt who heard about it from her neighbors mom who found it on the internet. No, you know what? I haven’t. You know why? Because my doctors & I decided that side effects of swallowing heartbane would be detrimentally to my continued living. Okay, so it’s not all so drastic as that. In all seriousness, I already try everything within reason, and will continue to do so. I take my meds, do therapy (both mental and physical), receive reiki, meditate, do yoga, and carry around rocks that supposedly have healing vibrational frequencies, not to mention the zillion rads of radiation my poor body has absorbed in an attempt to find out what’s wrong. So please, unless you have some kind of scientific research to back up your suggestion, keep your ideas to yourself. Related: “You should try…”

“If you just…”worked, exercised more, ate better, looked for a job, etc. This is closely related to the previous statement but is more angry-making. Most of us are working, exercising, eating as well as we can. Trust me when I tell you that if I could go back to working 60-80 hours a week and triathlon training, I would.

“Everything’s going to be okay.” No, lovelies, it’s not. I am going to live a life with pain and illness and then I am going to die, probably from a complications due to my illness or from all that afore mentioned radiation. (I have nothing else intelligent or polite to add to this paragraph. Mr. Feiler said it nicer then me, but it bore repeating.) Related: “You’ll be fine.” “You’ll feel better soon.”

“I know how you feel.” I’m gonna say, unless you have an illness like this, you don’t. Personally, I live in some level of pain every.single.day. And until I was 20ish, I didn’t even realize everyone else didn’t. Fibromyalgia is a constant drain on my resources, and how you feel during the flu for a week is not the same as nearly 30 years of the same sensations, sometimes worse or better. It’s just not. And while I understand the need to think it is, so you can empathize or feel better, you’re just making the ill person want to find a magic wand and make you vanish. Related: “I hate mornings too.” “That’s just like…” “I’m tired too.”

“Think positive!” Yes, there is science that shows being happy can improve outcomes. There’s also science that shows people with chronic illness tend to become depressed. Why? Because knowing you’ll be sick most/all of your life is DEPRESSING. That doesn’t take a PhD in psychology to understand. Thinking positive won’t magically make me better. Neither will “The Secret” or prayer or meditation. Those things *might* help, but I can’t think myself out of bad genetics. Related: “Have you heard of the Law of Attraction?” “Suck it up!”

“Taking pain pills will make you an addict.” Look, I’m not House, and neither are most pain patients. Physical dependency is not addiction. There were prescribed by a doctor to treat pain I am actually feeling, and I need them to feel better or to function. For a really good resource on this I suggest Living with Chronic Pain as it covers in detail how opiates work and why people in pain can take them safely. Related: “All those meds are making you sick.”

“You have no idea how inconvenient this is for me.” Want to make someone who’s ill’s blood boil in the span of a breath, say this. If you need to vent about this, I suggest you talk to someone other then the patient. I’ve born with these kinds of statements because illness effects other in my life as well and I try desperately to be compassionate, but they feel insensitive. The person most inconvenienced is the patient, so it makes it hard to rile up sympathy for how much this must suck for you. Sure, those feelings are real & deserve acknowledgement, but recognize that unless you have an amazingly patient, understanding patient you may get more backlash then understanding.

What might be good to say:

“How about I help you…”Genuine, specific help is great for most people. Everything from carrying out the trash to sweeping the floor or picking up meds will likely be met with gratitude. However, there are some people who really don’t want help. Don’t force them. Related: “Do you need anything while I’m at the store?” “Can I do X for you?”

“I’m sorry about your tests results.” For many people with chronic conditions, it means many, many tests. Often that come back normal. Sometimes not. But I’d say either way, you’re probably safe with this statement, though take the patients lead as a guide. If they’re happy and the tests come back with abnormalities – say this. If they come back normal and the patient is pissed that once again the test showed nothing – say this.

What is awesome to hear:

“I can’t begin to really understand what you’re going through, but I’m sorry you are.” The first time I heard this phrase, I nearly wept. There is no pity there. No claims to understand. Just genuine, sincere sympathy. I think back on it often, and I hold the doctor who said it in high regard.

“Let’s go grab a drink, if you’re up for it, and if not, I’ll come to you.” This shows the patient they are still valuable to you and you want to spend time with them, even if they are ill. Ask them for a drink, coffee, lunch, etc and if they’re not up for it go to them – and pick up whatever on the way. You can have fun laying on the bed or couch and catching up, sometimes more then out.

“Do you want to come…?” I love invitations to things – especially things where I will get to sit! Picnics, theater, outside events with minimal walking. Don’t forget that we’re still people who like to get out and do things! Invitations, especially if it’s okay to say maybe or cancel last minute, are fantastic because we get to be involved in the world.

“You are valuable.” “I love you.” “You are important to me.”
These statements are priceless. Knowing we are loved & cared for no matter if we are sick or not, makes the illness and it’s effects on our lives more bearable.

“You are handling this well.” This is a judgement free, supportive statement. It gives us space to cry and moan when it hurts, and room to be strong and happy when we can. It also shows you are paying attention.

“Would you like company?” YES! That would be lovely, thank you. Especially if I’m flaring and just want to mindlessly and quietly stare at the wall. And a great follow up is, “Just let me know when you’re ready for me to leave.” because this gives the patient the space to safely let you know when they’re tired or need to rest alone.

Our health issues effect us all differently, and we all deal differently, but this is a fairly good spread of the top things that hinder or help us with chronic illness. I checked in with my #spoonies and these were the questions and statements that came up repeatedly.

My boyfriend, Ben, suggested that it’s like being connected to someone in a different culture, and we need cross cultural education and understanding to help each other. I hope this post helps you better understand how to help and support those you know and love with chronic illness.

http://painydays.com/2011/06/13/youre-getting-better-and-other-lies/
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Re: Painy Days & Mondays - A JOURNEY THROUGH CHRONIC PAIN & ILLNESS

Post by whitzendJane on Sun Jul 10, 2011 4:18 am

Brilliant and so true..

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