National Invisible Chronic Illness Awareness Week begins today. This week’s purpose is to support and advocate for those who are chronically ill and to bring further understanding to those who want to learn more about life with invisible chronic Illness. You can visit the site to learn about the online conferences and seminars offered each day this week and to read their blog as well as informative articles. This week I will be blogging about Invisible Chronic Illness.
“You look great. I’m glad you’re better!” Words such as these are often said with the best of intentions to those with invisible chronic illness, yet they often leave us tongue tied. Though we appreciate that someone thinks we look great, the “glad you are better” part is hard to respond to as it is not the reality of living with chronic illness. No matter how good we may look, the “chronicness” (the on and on) of the illnesses we live with continues. We have times that we feel better/function more when we can look pretty healthy. (For some of us it may be a few hours at a time and for some a day or few.) Often these hours or days are when we can get out of the house, see people and hear, “You look great. I’m glad you’re better!”
Not knowing what to say, we often respond with an awkward “Thank you”. If we responded with the truth and said something like, ”Thank you, this is the first time I’ve been able to be up and around this week” or “Thank you, this new medication helps me have a few hours of pain relief”, we know these responses would make the well intentioned person feel uncomfortable and we don’t want to sound as if we are complaining or whining.
Communicating about Illness is not easy. ( Finding appropriate words to say to someone in times of any adversity can be difficult for all of us.) The adversity of Chronic Illness, continues on indefinitely, making communicating about it even more complicated.
Here are a couple suggestions to say to someone with a chronic illness who you see looking pretty darn good:
“You look good. I’m glad you’re able to get out today.”
“You look good. How are you?”
These greetings are warm and friendly and reflect our daily reality.
Responding to “How are you?” can be a tough question when you are chronically ill. I love when I’m having a day when my body’s doing the best it can and I have more energy and less symptoms and I can answer “good!”. For the other days (most days) I find “I’m hanging in there, how are you?” to be the most comfortable response. It is true and not a complaint.
For those of you who know a person with chronic illness well. Ask, “How are you feeling?”. It acknowledges your acceptance and understanding of our reality. It helps our spirits to have true friends and steadfast family members who we can share our truth with. When we are in unbearable pain or have been confined to bed by our symptoms for an awfully long time, it is a great comfort to be able to feel that life with chronic illness is not a taboo subject (especially to those we care much about).
For suggestions on what NOT to say to someone who is chronically ill you can visit Lynne’s blog Musings for the Soul (wise and funny).
Connie’s blog, My Chronic Life is full of great information about life with invisible chronic illness as well as about National Invisible Chronic Illness Awareness Week. She will be one of the online speakers you can listen to through the link at the top of the post. She speaks on Thursday, you can sign up ahead of time to hear her at the link at the top and bottom of this post.
I’m off to the National Invisible Chronic Illness Awareness Week site to sign up for Connie’s talk and more. Hope you will join me!
Hey Kerry~ I will check out the sites you spoke about and do some writing on this as well.
So many of the people I work with have invisible conditions. So did I! People would look at me and say how great I looked and that I didn’t look sick at all. How I took this (I am assuming they meant it as a compliment), depended on how I felt that day. Sometimes, when I was in pain for too long, I just figured they thought I was making it up. Which, interestingly, I had this thought many times my self.
Thanks for sharing this information Kerry.
And for all of you reading this post because you have an invisible condition, there is much love and support out here for you…even if that feels invisible sometimes too!
Oodles and oodles of love,
Lynne
Lynne, I hoped you would be one of the speakers on blogtalk radio this week! (Having heard you on blogtalk radio last year.)
Your perspective as a life coach who works with people who live with invisible chronic illness, along with your own personal experience and that wonderful sense of humor of yours, would make for a great segment.
I hope you will look into being a speaker for next year.
Look forward to reading your posts on Invisible Illness this week. (Readers, Lynne’s blog is the one mentioned in the above post, “Musings for the soul”.)
Thanks Kerry~ I didn’t get it together this year to participate…I was going to submit a blog post too and didn’t get to that either. Maybe you and I just need to create our own show on this topic. Would you be interested in something like that?
The women that I was going to do this with have decided to focus elsewhere.
Whaddya think?
Give me a jingle and let me know~
Ta Ta for now
Lynne
[...] Lemon-aid has some suggestions about how to talk about invisible chronic illness. Communicating about Illness is not easy. ( Finding appropriate words to say to someone in times of any adversity can be difficult for all of us.) The adversity of Chronic Illness, continues on indefinitely, making communicating about it even more complicated. [...]
[...] know how some blogs just look refreshing? We loved this Lemon-Aide: Living with Complex Chronic Illness blog. Nice post, nice feel. Thanks for your [...]
Followed your link from Lisa’s blog this morning and have found such a beautiful treasure. Thank you for sharing. I’m going to bookmark this blog and come back often.
So that’s the first thing I thought of when I read the title “Lemon-aide”.
On a side note, when I’m having my worst struggles with nausia (frequently) one of the most helpful aids I have is a ziplock baggie with sliced lemons. I keep sniffying them and it can often get me through the worst of it and keep my food down in my tummy where it belongs.
Hey! I just found this site and I love it! It’s so nice to not feel alone. I honestly hate it when someone tells me I look great, but I feel so sick and in pain. I know they mean it as a compliment, but it’s still difficult to hear. Thank you for your posts and advice! Em
http://chronicillnesssurvival.blogspot.com/
Hi, I just found this site too. It’s so encouraging to be reminded that I’m not the only one out there who deals with this.
So often, I feel like people think that it’s all in my head and it’s so frustrating. Now, I’ve taken to not discussing it with people and when they ask I’m always “fine” when I’m really in pain.
Anyway thanks for the posts!
Hi I just found this site, looks like you have some interesting articles to read. Very good post, its very hard for people without a chronic illness to understand how awful it is to be told how well you look when inside you feel terrible.