Every time I meet someone who's just been diagnosed with a chronic illness, I feel like I'm looking in a mirror. I see the frustration in their face, hear the desperation in their voice, and remember that not so long ago, I felt as lost and panicked as they feel right now. I listen to their concerns, their fears, and think, "that's exactly how I felt," and I mean exactly. It's as though we're all reading lines from a play - as if there's an actual script that we're handed the day we're diagnosed.
I'm thankful every single day that I started attending a lupus support group early on - so that I could hear the script being read by everyone else in the room, and not just me. So that I could see their heads nod in agreement, hear their words of encouragement, and feel the power and strength they were able to conjure up, in spite of their disease.
It's because of the women and men in my support group that I was able to see clearly enough to make sense of my 0wn life with lupus. They earned a credit in the Acknowledgements of my book, and appear in practically every chapter. Without them, I would still be floundering...and blindly reciting the lines from the lupus script over and over again. See if any of these "lines" sound familiar:
If I slow down, I'm afraid I'll lose my get-up and go attitude.
My future is never, ever going to be the same.
If I give in to the disease now, I'll never be able to reassert myself later.
I have to take advantage of today - who knows what I'll feel like tomorrow.
If I don't act like I'm sick, maybe I won't be.
Every day I wake up in pain - will it ever stop?
I have so many decisions to make - about my job, my life, my family - but it's so hard to think straight.
How can I ever get ahead of the disease when it seems like every day, there's a new symptom, a new side-effect, or something new that I can't do?
I said all of these things and more, many times, over and over again. Don't think you're alone, and don't feel that you have to face this without help. There are ways to work through life with a chronic illness - ways in which you'll be able to emerge victorious. The script you're reading from just needs to be rewritten.
Do you have someone you can talk to who knows what you're going through? Are you in contact with other people with chronic illnesses? Are you attending a support group? If not, I encourage you to reach out, and connect with someone today. Maybe you're not quite ready to attend a meeting, but I bet you're definitely ready to feel like you're not alone. Check out the Lupus Foundation of America website today - give a call to the office - talk with someone who understands.
And my revised script? It even has a name. It's called "Despite Lupus."