Have you entered our photo contest yet for Invisible Illness Awareness Week?
It just takes a minute and you can upload as many photos as you want. We are talking about CHOICES here at Invisible Illness Awareness Week this year. We can’t choose our illness, but we can choose many other things
Here is a fun way to share about our photo contest. If you can’t see the video below, click here. Take a second to share it on a social media platform.
Pass the smiles around!
Part of the challenge of living with an invisible illness is explaining it.
I mean, if we lived isolated and it was you and your illness on a deserted island, would it really matter if it was visible or invisible? Not really.
It’s trying to find our place in a culture that values health and who pretty much believes, if you are ill, you must have done something to cause it. We find ourselves defending it, trying to show the legitimacy of it. We can get caught up in explain illness and all that it entails rather than just focusing on being the healthiest ill person we can be.
Many of the seminars this week have focused on how to better explain your illness to those who expect to see the pain you are in. Wayne and Sherri discussed things people say that are not (and are) helpful; Georgia talked about how our personality styles can make a difference in how we respond to being “cheered up.”
Rosalind discussed what it’s like when your peers at work cannot see your illness. Mary talked about how much talk about it is too much. And Tiffany described ways to try to educate those around you. More seminars coming up talk about marriage, and recovery and trying to explain illness to those around us.
Can we admit. . . it’s tough, isn’t it? Even when we have people who sincerely want to learn what is helpful and hurtful, it’s still hard for them to remember all the time because (1) they don’t live in our shoes–or rather, in our body. (2) Since they don’t have the daily pain, they can easily forget. It just slips are mind. We all have a lot on our mind, so can we really blame them?
But the key here? We keep trying. We offer suggestions. We allow others to make mistakes. We give grace when we are angry. We learn to take care of ourselves, by stepping back from certain relationships, and we learn when to take what someone can offer and lower our expectations.
I put this little video together last year for Invisible Illness Awareness Week and it has nearly 9,000 views. You are not alone. We are in this together. And remember, when people say things that hurt, it is because they don’t know better. They don’t know it’s bad etiquette. Most the time, they are not trying to be hurtful–they just don’t know how to help.
Did this hit home with you? Do us a favor and pass it along to encourage someone else. Share it, pin it, whatever — we appreciate it!
Online support is a powerful way to connect with others who understand what it feels like when you suffer.
Do you remember life before the internet when there was no such thing as online support? Some of us certainly do. The only way we could really talk about our illness or find someone who understood what we were going through was to attend a support group. Support groups are beneficial, but some of them are also not much of a support ironically.
You have get dressed, find directions, drive somewhere, and sometimes hike through a large parking structure and building just to connect with a few people that “get it.”
Online support has changed all this. And we hope with the link parties below you will find some encouragement and hope. Thousands of people have blogged about Invisible Illness Week over the years and many are participating this year as well.
Check out some of the web site where people have shared their stories, their aches, their joys, and have created an oasis of online support for those with invisible illnesses or chronic conditions.
Your story – Here you will find bloggers who are sharing a part of their invisible illness journey with you, what they have learned, what they struggle with, their hopes, dreams and disappointments.
“I CHOOSE TO ______” 2013 campaign-themed blogs – What do you choose? It could be something major, like “I choose to go to college” or it may be a smaller goal like “I choose to get dressed before noon.” Or even something more emotional, “I choose to know when to set boundaries.” Have you written about what you choose at your blog? Link it up here so others can find you!
Your Visible Hope Blogs (2012) – Are you taking photos of things around you that show your hope for this year’s campaign? If you are more of a visual person, you may find some online support through people’s images that show hope despite the pain. You will also find people who have written about this experience of finding hope in everyday people, places, things, or thankfulness.
Your Blogs for the Cause – Invisible illness issues can stir up a lot of emotions and we know YOU have something to say! Here you will discover people who are blogging for the cause, sharing their thoughts, and letting readers of their blog know about Invisible Illness Awareness Week. They offer so much online support for each of us, so go read and tell them thank you for being an advocate for all of us!
Your 30 Things Meme – We have a meme that can help you discover and share different parts of living with invisible illness. Hundreds of people have participated since 2009 and here are some of them who have linked up to us!
We hope you are able to find some wonderful online support through these “link parties” above. And don’t forget. . . you can join all of them yourself if you write something on your blog. Just scroll down past all the other links and click the “add link” button. It’s easy and you will be sure to connect with others for some awesome online support!
Have you ever gone to a party and stood around and had the conversation like the one below? If so, you may just be more “normal” than you think, because most of us with chronic illness could have written this script!
Friends can have the best of intentions, but we still can feel like we keep saying, “yes, but. . . ” and even we can get sick and tired of feeling sick and tired!
We look forward to your thoughts? Have you ever had a conversation like this? What would you have said differently?
Video is Copyright Lisa Copen, 2011 – Please feel free to embed or share, just include all code so it leads back to http://invisibleillnessweek.com – thanks!