Over 1200 people took our survey back in 2008 and one of the things they shared was how they respond to the well-meaning (but annoying) comment, “You look so good!”
We know people mean it as a compliment, but still. . . doesn’t it sort of feel like they are saying, “You don’t look sick, so what’s this about some illness?” Even though we know they have good intentions it seems like it gets under the skin of many of you. One author even wrote an article for us about whether she should wear makeup or not when she feels really lousy.
And we discovered from our survey, that sometimes you just have to respond to “but you look so good” — a smile doesn’t say all that you want to say.
But, of course, one of the temptations is to use sarcasm in our response.
Most of us can say that it depends on who says it. We may be more likely to smile and say, “If only it were true!” to a friend who doesn’t really get it. To the person behind at us the grocery store who commented about our groceries, we are more likely to say something sarcastic since we don’t have to deal with repercussions of a stressed relationship.
Just remember that our seemingly justified bitter comments back at them can only alienate people more and it does nothing to create an awareness of invisible illness. But who of us doesn’t relate with wanting to say a few of these things on the list below?
The most telling comment I read was from a woman who simply said, “I wonder why they can’t see my pain in my eyes?” It’s a good reminder that though we sometimes think the world should accommodate our emotional needs, who around us is hurting for other reasons (divorce, loss of job, loss of loved one, etc.) and they are wondering about us, “Why can’t she see the pain in my eyes?”
Be sure to add your own at the bottom in the comments section!
- I am hangin’ in there…
- I am so blessed. God is so good.
- Drugs are a wonderful thing
- I have my good days and I have my bad days.
- I clean up well.
- I have my ‘good’ days….but this isn’t one of them!
- Thanks, I wish I felt better.
- That’s a perfect example of how you can never judge a book by it’s cover.
Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
- 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.
- 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.
- You should be on the inside.
- Thanks. I have more to be grateful for than I have to complain about – which means I have a LOT to be grateful for!
- Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
- . . .And that’s all that really matters, isn’t it?
- Powder and paint, make you what you ain’t!
- It took a lot of work to look like this.
- It’s God shinning through me
- It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
- And you look so wise. Looks can be deceiving though, huh?
- I’m having a “good face” day.
- Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
- 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.
- I’m trying my best to do well OVER my circumstances instead of being under them!
- It’s up and down.
- 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!
- I’m not complaining about my looks.
- I’m very good at pretending.
- Good, because if I looked like I feel it would scare you to death.
- Actually, I still am really hurting…
- I am 36 years old outside but 85 inside
- Thank you. I’m on my way to the Oscars.
- Thanks, I’m grateful for this good day.
- Things aren’t always what they seem.
- Praise God, I’m glad that he enables me to look so much better than I feel.
- Thanks, that’s God’s joy shining through!
- Have you ever heard of the spoon theory?
- I am upright which is better the alternative
- Thanks, want to swap bodies for a few days?
- Thanks, I guess I am fortunate that I have an illness that can’t be seen.
- Thanks. I like good days.
- Want to step inside my skin?
- It’s amazing what a shower can do. I guess I am all cried out for now
- Thanks. . . I wish I felt it!
- I’m not complaining about my looks.
- I’m very good at pretending.
- Looks can be deceiving (and smile)
- Thank God for makeup!
- Thank you for caring. I try to act like I feel better than I really do.
- Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.
- I’d be great if it wasn’t for the pain.
- I’d complain but who wants to listen.
- If I can’t feel good, at least I am determined to look good!
- I’m in good shape for the shape I am in!
- Smoke and mirrors!
What do you say when someone exclaims, “You look so good!”? Or what> would you say if you could say anything? (Keep it clean!)
If you struggle with people understanding that looks can be deceptive, you may enjoy Sherri Connell’s booklet, You LOOK So Good! This is just one chapter of topics: I Never Know What to Say!; It Seems Like I Can Never Get It Right!; I Still Do Not Understand!; Couldn’t I just Try To Cheer Them Up?;But I Really Think My Suggestions Are Helpful!;So, Why Do I React That Way?; What “Discourages” Them?; What “Encourages” Them?; Being A Comfort In The Face Of Tragedy
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Share your hope! Even though you live with an invisible illness you can find visible hope each day. So join us and share your hope!
Are you ready to kick things off? We are! The theme for this year’s Invisible Illness Awareness Week is “Invisible Illness? Share Your Visible Hope!” And Lisa’s video below tells you exactly how to start doing that today! We invite you to share your hope with the rest of us.
One of the ways to share your hope this season is by uploading images/photos (of your own) that show that (despite living with an invisible illness) we can and do have visible hope. Living with illness doesn’t have to mean all doom and gloom. In fact, thousands of people challenge each other every day to “share your hope!” online. They inspire others through their writings, videos, podcasts, quotations, and photos. Even if you have never uploaded an image before we hope you will be inspired to join us!
And remember to add #iivhope to the description of any video so we can find them all over the internet with this tag. We want to share your hope too!
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Invisible Illness Week is kicking off the pre-campaign this summer!
We will soon be sharing about our campaign, images of hope, and much more. Many people are signed up to receive emails when this web site updates, and we tend to be a bit quiet during many of the months, so you may not remember that you signed up for our emails.
Just a gentle reminder, that if you do not wish to get these updates via email, rather than reporting our site as spam, please just click “unsubscribe” at the very bottom of your email.
It will keep us all in check with the spam laws, as well as make it easier on you having a clean email in box.
Thanks so much for your help. I am looking forward to your invisible illness stories and images of hope!
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Last year hundreds of people participated in our “30 Things Meme.” We’d love to hear from you again (A new year may bring new answer, so even if you filled this out last year, we would love to see your answers this year, as well! ).
This is a great way to blog about your invisible illness too. We may say, “No one understands!” but have we really given them the chance to?
Copy the 30 things meme below, fill it out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.
And don’t forget to let us know about it! Fill out the form below (scroll down past the meme) with name of your blog and where the meme is posted so we can come read it!
Thank you for participating and spreading the word.
30 Things About My Invisible Illness You May Not Know – 30 Things Meme
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:
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Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?
I am thrilled to announce that I recently had this blog post, “Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?” ran over at the Huffington Post. Please be sure to visit and leave a comment to help us increase awareness of invisible illness issues.
Invisible Illness Week Founder
- NOT WELL: Salahi reveals MS diagnosis (politico.com)
- Lisa Copen: Does “Housewife” Michaele Salahi’s Confession of MS Help or Hinder Illness Awareness Issues? (huffingtonpost.com)
- Michaele Salahi Has Multiple Sclerosis (thehollywoodgossip.com)
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Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness?
What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.
I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet.
However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.
While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependent on many factors:
- Your current field of work: Is it suitable for a work-at-home environment?
- Your relationship with your employer: Are they flexible?
- The way your home is set up: Do you have room to work from home?
- Your financial situation: Do you have funds set back to start up a small business if needed?
- Access to equipment: Do you have a dependable computer/laptop, printer, phone, etc.?
- Your abilities: What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?
Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.
I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.
God bless you as you pray about what He has in store for you! Jeremiah 29:11 says “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”
Jennie Krogulski resides in beautiful Bluffton SC, just off the coast of Hilton Head Island. She lives with Dermatomyositis, Fibromyalgia, Toxoplasmosis, Hypothyroidism, and an iron absorption disorder. Jennie owns Hilton Head Nannies, a national placement agency, and most recently started a social services agency—Lowcountry Family Connections. Jennie delights in spending time with family & friends, and being “Jen Jen” to the many children in her life.
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What else can you see?
Because you can’t see past it.
I should probably not complain that I’m living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don’t usually let people see past the smile because they’ll see the real me and I hate appearing weak. I also don’t want them to see what I deal with. It’s a double edged sword. It’s an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it’s also invisible because we don’t want people to judge us. We get enough of that from doctors, we are afraid we’ll also get it from everyone else.
What you don’t see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It’s a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn’t real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it’s in bed.
This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I’m not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn’t know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.
One of the biggest adjustments I had to make, and I’m still making, is knowing my limitations. I’ve said it before and I’ll say it again. I’ve never liked limitations. It doesn’t matter if it’s mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn’t be. I’ve always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn’t often, I tend to make the most of it. I know, not good. You’d think I’d be getting the hang of it by now, but I haven’t. I still hate what my body has done to me.
I found my voice in blogging which is weird because I’m not real open with people. I’ve always been outgoing but very few ever got to see the “real” me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn’t scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I’ve left many friends and family by the wayside. I’ve been able to communicate about the pain and depression. Again many things surprise me. I’ve also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!
The other adjustment I’ve had to make is in the area of control. I’ve always like to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don’t care whether it’s physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.
So it’s 3 a.m. and it’s another night of robbed sleep. I will try to close my eyes but I don’t have high hopes. I’ve taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they’re supposed to calm down. I’ll end this post and turn off the lights and hope beyond hope for a few hours of sleep.
Rosemary Lee lives with fibromyalgia and she tries to find humor in everyday life. Sometimes it works and sometimes it doesn’t. She says, “I am an analytical dreamer. Oxymoron? I think not.” Visit her blog, Seeking Equilibrium.
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By: Carolyn Matheson, Master Certified Coach
Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.
I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.
I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.
As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.
It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.
When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.
What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.
I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.
Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: firstname.lastname@example.org; twitter @capcoach; blog www.carolynsmatheson.com
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Many symptoms of multiple sclerosis are invisible to the casual observer. We aren’t all in wheelchairs or use canes, nor do we all share the same obvious symptoms. We often appear to be the very picture of health.
In many ways, that’s a good thing. Who doesn’t want to look healthy, strong, and vital? In fact, some of us go to great lengths to achieve that healthy look. But the invisible symptoms of M.S. can also cause misunderstanding and lead to emotional stress.
Some of the most common complaints of people with M.S. are fatigue, numbness, and weakness– things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.
That’s enough to contend with, but what if your family, friends, and co-workers don’t really believe you? What if they think you are faking, or taking advantage of your diagnosis?
“But you look so good” is the phrase that in most circles is taken as a compliment, but people who live with invisible illness often view it as having a double meaning. We may be inclined to wonder if the real meaning was, “you look fine — there’s obviously nothing wrong with you, so why are you faking it?”
That kind of emotional mind game can take a heavy toll and even leave us to question ourselves. It’s not difficult to fall into that trap. In the long run, we are limited by how much we can change someone else’s thinking, but eventually, we’ve got to make peace with ourselves.
We can do our best to educate those closest to us, to help them understand invisible illness. But at some point we’ve also got to stop evaluating ourselves based on what others choose to believe. Not everyone will get it, and we cannot allow that to affect our own self-worth.
If we put in the effort to look good, perhaps it’s best to accept the compliment and not concern ourselves with any hidden — or not so hidden — meanings. Ultimately, we live with our own truth.
If you love someone who lives with invisible illness, please take the time to learn all you can about their condition and really listen to what they have to say. Appearances can be deceiving, and not always a good indication of health status.
And one more tip — instead of saying, “But you look so good!” try “You look great… but how are you really?” A little compassion goes a long way.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. This was originally posted on Care2.com and has been reprinted with the author’s permission.
- Creating Pain Awareness Through Photography (invisibleillnessweek.com)
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Thank you for letting someone find a note that let’s them know someone believes in them.
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