** Due to the increasing severity of MY ILLNESS, it has become impossible for me to continue to post on a regular basis. Unfortunately, as much as I desperately long to, I am also unable to visit each of your blogs often or reciprocate all the loving, supportive comments many of you continue to leave - even though at times it may appear as though you've arrived at some long ago, forsaken blog! With that said, I really want you to know that I miss every single one of you and that I really am still here! I'm just too sick and too weak most days to be able to sit up long enough to create a brand new post...or even read one. However, I absolutely do receive AND read every new encouraging word you leave (and, often, the old ones, again and again!) and I cherish them now more than ever! I truly appreciate your love, support, and, most importantly, your precious time spent on your knees in prayer for my family and me. It ALL means the world to me and I am truly blessed to have friends like you!
~Hugs and Sister Love, Teresa

FYI: All comments come to my email, which I can easily read on my phone. I also enjoy Facebook on my phone because I can catch up on A LOT in a very short time there. Soooo, if you're on Facebook, come 'friend' me there! {{HUGS}} **

Friday, September 11, 2009

BUT YOU LOOK SO GOOD.....

This is a comment those with invisible illnesses hear quite often. The person saying this may mean for it to sound like a compliment. However, to someone who is really sick and in a lot of pain, yet their illness appears invisible to others, that 'compliment' may seem as though the giver does not understand or acknowledge what they are going through.

There are many examples of invisible illnesses such as Crohn's Disease, Multiple Sclerosis, Epilepsy, Fibromyalgia, Spinal Disorders, Lupus, Lyme Disease, Rheumatoid Arthritis, Cardiac Abnormalities, Brain Disorders, Sjögren's Syndrome, Hyperhidrosis, Autism, Diabetes, Scleroderma and many, many others. People with these illnesses and disorders may look 'normal' or 'well' but are often very seriously ill and/or in a lot of pain.

I'm often asked, 'How are you doing?' or 'How are you feeling today?' I used to try and explain how I was feeling and what my current state of health was, but it has just gotten to be too complicated. So now I will usually say, 'I'm hanging in there.' I've found it is the best answer and usually satisfies most people who don't really want to know all the details anyway.

2008_small-size_med-resolution

In anticipation of National Invisible Illness Awareness Week, coming up next week, a poll was conducted of people who have an invisible illness. Participants were asked how they respond to this 'compliment that pulls at the heartstrings'. Here are the top 54 responses of the 1200 people who responded:

(Be sure to add your own at the bottom in the comments section!)

  1. I am hangin’ in there…
  2. I am so blessed. God is so good.
  3. Drugs are a wonderful thing
  4. I have my good days and I have my bad days.
  5. I clean up well.
  6. I have my ‘good’ days….but this isn’t one of them!
  7. Thanks, I wish I felt better.
  8. That’s a perfect example of how you can never judge a book by it’s cover.
  9. Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
  10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
  11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
  12. You should be on the inside.
  13. Thanks. I have more to be grateful for than I have to complain about - which means I have a LOT to be grateful for!
  14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
  15. …And that’s all that really matters, isn’t it?
  16. Powder and paint, make you what you ain’t!
  17. It took a lot of work to look like this.
  18. It’s God shinning through me.
  19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
  20. And you look so wise. Looks can be deceiving though, huh?
  21. I’m having a “good face” day.
  22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
  23. I do a great job hiding how I really feel. My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
  24. I’m trying my best to do well OVER my circumstances. instead of being under them!
  25. It’s up and down.
  26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
  27. I’m not complaining about my looks.
  28. I’m very good at pretending.
  29. Good, because if I looked like I feel it would scare you to death.
  30. Actually, I still am really hurting…
  31. I am 36 years old outside but 85 inside.
  32. Thank you. I’m on my way to the Oscars.
  33. Thanks, I’m grateful for this good day.
  34. Things aren’t always what they seem.
  35. Praise God, I’m glad that He enables me to look so much better than I feel.
  36. Thanks, that’s God’s joy shining through!
  37. Have you ever heard of The Spoon Theory?
  38. I am upright which is better than the alternative.
  39. Thanks, want to swap bodies for a few days?
  40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
  41. Thanks. I like good days.
  42. Want to step inside my skin?
  43. It’s amazing what a shower can do. I guess I am all cried out for now.
  44. Thanks…I wish I felt it!
  45. I’m not complaining about my looks.
  46. I’m very good at pretending.
  47. Looks can be deceiving. (and smile)
  48. Thank God for makeup!
  49. Thank you for caring. I try to act like I feel better than I really do.
  50. Thanks, I am trying to, even though it will never go away. I just try to remember things could be worse.
  51. I’d be great if it wasn’t for the pain.
  52. I’d complain but who wants to listen.
  53. If I can’t feel good, at least I am determined to look good!
  54. I’m in good shape for the shape I am in!

If you have an invisible illness, what do you say? Or what would you say if you could say anything?

This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisibleillness.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

Listen to Invisibleillnessconf

on Blog Talk Radio

35 comments:

Lisa Anne said...

Yeah it's hard to keep repeating yourself and how you are feeling everyday. I don't think there is anything wrong with just saying "Hanging in there" or "as good as can be expect" etc. Feel better!!

Neuffj said...

I actually was really sick at the begining of this year and the Dr.s couldn't figure out what was wrong with me. I had to drop out of school and I lost my job cause I couldn't do anything. I lost a ton of weight cause I was soooo sick. When I was asked continually how I was doing... all I could say was "I'm doin"

Thanks so much for coming by my blog. Thanks for becoming a follower. Thanks for saying you would participate in Fab Friday Newz next week!

I'm sorry for your illness. I'll be back.

Mariah said...

DRUUUUUGGGGSSS and Makep and BIG sunglasses help

Crown of Beauty said...

Hang in there, dear Teresa. Never give up.

And today as we remember 9 11, let us look up in hope for our redemption draws near!

I have dedicated my Sept 11 post to all my American friends.

Love
Lidj

Samantha said...

I am praying for you dear one, thanks for sharing.
~ Have a blessed weekend !

My Baby Sweetness said...

Thanks for stopping by my blog and hi from SITs.

I haven't experienced that type of illness myself, but have had a few people in my family with long term illnesses. I know that I always tended to just give generic responses of "fine" - I know people meant to be kind, but I didn't generally get the sense that they really wanted a long story. I think "hanging in there" is a perfect response.

shraddha/april@theselfloveproject said...

Thank you for sharing your deep felt thought..

your posts are awsome

shraddha

Traci~ Ordinary Inspirations for the everyday wife, mommy, and homemaker said...

Come Grab YOUR BLOG AWARD my dear!

http://ordinaryinspirations.blogspot.com/2009/09/your-blog-inspires-readers-award-give.html

Judy Harper said...

Teresa-Thanks for stopping by my blog. I'm going to send your website to my sister, she has Rheumatoid Arthritis, plus she had a stomach bypass in July08 and has had many problems. She is very low emotional and physically. I have tried to support her, but she comments to me and her children so many times, "you just don't understand until you feel the pain," and that is so true! Judy

...Mrs. Southern Bride... said...

Thanks for sharing!

Robin said...

I have a very sick thyroid which (2 years now) we are still working to find a proper dosage meds to get it back on track. I never thought of it as an invisible illness. I just saw it as "growing old", falling apart. When I was first diagnosed, my numbers were so high they said it was a miracle I was living....that I should have been comatose at the very least. And yet, when I think of you and all you have been through / and going through, I have nothing to complain about. I feel very fortunate....even on my icky days.
Thanks for all the inspiration, great information and great links.

Wishing you a beautiful weekend
xoxo

Jeanne said...

Teresa,

Regarding "how are you doing"...

I got a kick out of your standard "I'm hanging in there" response because that is exactly what I have been saying for many years now.

I have found this phrase to be the single most effective way of truthfully answering the question without having the conversation turn into either an interrogation of me about my illnesses or someone dismissing my symptoms and upsetting me.

I say truthfully because I refuse to answer "I'm fine" when I am actually very ill and/or in pain! I refuse to pretend to be peachy keen. At the same time, I don't necessarily feel like explaining myself or trying to educate people about illnesses 24/7.

I spend a fair amount of time/energy in my life spreading awareness of various conditions/chronic illness.

That doesn't mean I need to take every encounter I have as the time or place to do this. That would be exhausting and, frankly, some people just don't want to hear it.

I have found that most people really don't care to hear a detailed response to this question and are simply making conversation.

So it's less energy for me (by far) to state simply, "I'm hanging in there" and leave it at that. This also prevents those who are squeamish or not interested in discussing medical matters from feeling awkward or uncomfortable.

I have been using this phrase for many years and it is the best response I have come up with by far.

Jeanne

My Big Fat Super Super Obese Blog said...

Hey there, I found your blog through SITS when I went over to the Beach Body Blogger's website as part of today's challenge. I read your comment and identified with it SO much! I've gained and lost so much weight over the years and my invisible illness (depression) is usually what does me in.

I look forward t reading more on your blog :)

Feeling Fit With Dana said...

I am keeping you in my prayers! My hubby was in a motorcycle accident July 31. He broke both his legs and will be in a wheelchair for quite a while. Atleast another 6 weeks. He is experiencing a lot of what you are mentioning here with the questions. He also uses the I'm hanging in there phrase. I know his situation isn't the same as yours, but we can understand a little of what you are going through.

April Belle said...

Teresa you continue to educate me to invisible illness and I thank you for that. I think back to a retreat I went to once - we were asked to be totally, ruthless honest about how we truly felt. If someone would say "hi," but it wasn't in us to say "hi" back, we were told to just walk on by.

It showed me how much I default to those meaningless phrases you listed. If someone was to say, "you look great," but that wasn't my reality, I now might answer, "That's not my experience," and let them interpret that however they want. Or maybe even, "That's not my reality." Then smile and wish them a good day.

Anyway, God bless you for your incredible insight and heart!

Hugs,
April

Missy said...

I do not personally have the invisible illness, but my son does.

Those questions and comments are difficult to answer on a daily basis. I'm still working on proper responses.

SPEAKING FROM THE CRIB said...

this makes me thankful for my health. thanks for sharing

Kim said...

I didn't know there are so many invisible ilnesses. Thanks for enlighting all of us. I learn something from your blog each time I read.

Debbie in Nashville said...

Thanks for stopping by and entering my giveaway again. I am always so happy to see a comment from you and the quotes you leave are absolutely wonderful! Love the one you left today! Thanks and hope you are having a wonderful weekend.
Debbie

Deb said...

You amaze me.

Your attitude.

Determination.

The way you keep hanging in there.

And hanging on.

Even when you feel like quitting.

Sweet dreams, sweet friend.

Yaya said...

"I'd like to thank the Spoon Theory."

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

lynne b. [my life in blog] said...

hi :) thanks for stopping by my blog the other day & complimenting my name. it took forever for me to come up with something!! my mother has MS so this is a wonderful post. many people dont realize. my mother walks around always with a smile but alot of the time is crumbling inside, due to pain. thanks for making other's aware.

Tracy said...

Thanks for sharing this. It helps me to be more conscious of what others with invisible illnesses are feeling.

WhiteSockGirl said...

I am one of those people who are loud, always talking, but in such situation, I totally get tongue twisted. Always ask the wrong question,... and respond the wrong way.

Thank you for the article, and thanks for sharing.

Meg said...

I usually say "I'm just happy to be out of bed." And I make a point of thanking the few friends I have who will tell me that I look like I feel terrible. (Because they are almost always right.)

Ms. Wanda said...

I'd probably say, "It is what it is:)" and keep it movin!

Thank you so much for stopping by my site:) I love yours it's beautiful!!!

xoxoxx
Ms. Wanda

bluecottonmemory said...

I'd probably want to say, "You are one might brave woman. Do you wann pray together about anything because when two or three stand together, God takes care of it. I'll stand with you. Wanna pray?"

What a heart-felt post! I've felt over the last few years that ,"How ya doing" is an invitation to whine away my faith talk.

I also wanted you to know that I finally got internet at our new home in our new state, so I don't have to go to the in-laws everytime I need to log-on. I can't wait to accept my award. I'll be doing that next week. I think about what I want to say before I post, and then even that goes out the window sometimes. You encouraged me at a time I really needed it. Thanks for standing with me, encouraging me, and lifting me up. You are a blessing:)

blogger said...

hiya blogger!

Bloggerchat team has found ur blog to be very interesting and unique!

And so we invite u to become one of the authors of our website www.bloggerchat.in which is the most exciting place for all bloggers n writers out there!

U could publish ur posts, get comments, enter contests, win cool gifts, gossip, fight, unwind urself and much more!

U can start out by registering at www.bloggerchat.in/wp-admin or just visit d site and follow the instructions!

For any queries, mail us at this id.

Cheers!

Bloggerchat team

Samantha said...

Thank you so much for stopping by my blog and leaving such a sweet comment! I personally think that "I'm hanging in there" is the best. It doesn't give a lot of detail as to how you're feeling, but it conveys the fact that you're not giving up.

Keep on hanging in there - you seem to be full of optimism, and that's so admirable and inspiring. :)

Kristin said...

I'm so sorry for your pain!

Tammy Howard said...

Oh, a couple of those are just awesome.

I'm sorry you hurt.

Neuffj said...

I just wanted to let you know that I sent you a blog award. Swing by The Neuff and pick it up! I've missed you around here! I hope you are feeling okay. Well, as well as can be expected.

Hannah said...

My mom's right: your blog really is inspiring! By the way, it's my birthday!

kiwimeg said...

Great list of replies! I needed some new ones!

The worst is when people say "You must be feeling good today, you look great" . . .

Jennifer, Sunshine, Angel, Miss Thang, Baby said...

I actually think a response of I'm hangin in there is really much too casual an answer. I'm not so sure a question about how you feel based on how you look is appropriate.

How about "Just pray that you don't get it. Oh, by the way do you even know what I have?"

This way the people who understand your illness won't ask the question and those who don't will only ask once.

By the way, thanks for visiting my blog. The super duper easy stir-fry recipe is now posted in the comments.

Linkwithin

Related Posts with Thumbnails