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!