When I became very sick 30 years ago and the diagnosis was multiple sclerosis, I didn’t have a clue what that meant.
But hey, I wasn’t alone. No one else did either.
Not much has changed — which is why it’s still chronic illness and not cured and healthy!
But one thing I know for sure. It would have been very helpful if someone had talked to me about the challenges of living with something that wrecks havoc with your body/mind/life, is unpredictable in every way imaginable — but ( and here’s the kicker!) is completely invisible to others.
It’s that last piece — that my experience didn’t show itself — which has been so isolating. Early on I found that two things helpful:
- Staying busy with meaningful activity (raising children and working) took the focus off of my sick body, and
- Trying to share my experience with others so I didn’t become emotionally isolated.
It’s still a work in progress. But the good news is that it’s gotten easier with practice, time and some wisdom.
The invisible nature of this – – you look the same today but your body feels quite different — means that it’s up to us, you and me, to offer whatever information is necessary. And that’s often really tough to do. Especially when others depend on you to “show up”.
Which is why Invisible Chronic Illness Week is such a fantastic gift. I’m very grateful to Lisa Copen at Rest Ministries for making this a topic of conversation and making it a learning environment — where we all get to learn strategies and new ideas. This is my 3rd year and I’m continually impressed by the quality of the topics and speakers. And this year it looks better than ever.
Invisible Chronic Illness Week. Be there!
Rosalind aka cicoach.com