To the Loved Ones Wondering Why I’ve Disappeared From Your Lives
I haven’t made it easy for you. I can take two or more months to respond to your emails and have become a ghost on Facebook. Sometimes I’m quick with my responses, but other times computer screens and other bright things make me feel sick. This can go on for a while, and I know you worry when I give you nothing but radio silence. You might even feel frustrated but then quickly feel guilty when you remember my situation. I’m telling you to let go of that guilt.
It’s not easy being my friend. I cancel things at the last minute. When I do come, I’m always late. Then I make you late, which must be frustrating for you. But if it is, you never show it. To someone like me, where five painful minutes can feel like 10 hours, empathy is worth more than gold.
Thank you for sticking around.
I want you to know you’re fabulous people. You may feel helpless when it comes to me, but you do more than you will ever know. For all those times I’ve had to try restrictive doctor-mandated diets or refused to dance for fear of falling, thanks for not being weirded out or being judgmental.
Thank you for showing me you’re thinking of me when I’ve been out of touch. Thank you for sharing some great laughs and writing letters when you know emails or phone calls are too hard on my senses. Thank you for sharing your good news and bad and letting me be a good friend to you.
There’s a confession I need to make. I’ve lied to you in the past. You see, I’ve had this illness all my life. Early on when I seemed full of energy and did those stupid and silly things to make you laugh, that was me pretending to be healthy. I’ve always been sick, but I’ve been pushing myself to appear as normal as possible.
When I don’t think you’re looking, I can be found slumped in a chair, cradling my head in my hands. Do you remember the day we chatted while I was leaning against a wall in a way I hoped looked leisurely? I was actually trying to brace myself against severe abdominal pain. One day, the condition got worse, and I found I couldn’t hide everything as well. Why did I pretend? Because I was worried you might distance yourself if I looked weak. I’m so happy to be wrong, and I’m sorry I underestimated you.
To my sister and parents, you’ve stuck by me and encouraged me beyond what any person deserves. I know I’m lucky and feel incredibly wealthy because my story is not the typical experience, sadly. You even love and support my husband when things are extra tough. I feel like I’ve been a part-time daughter, sister and friend, but you’ve never acted like a part-time family.
While this is a letter of thanks to a particular set of people, I’d like to tell anyone who might be reading this that your goodness doesn’t go unnoticed. If you know someone with a chronic illness and haven’t gotten in touch because you fear it might be awkward, go ahead and give it a shot. Be that familiar human voice on the other end of the phone. Write a letter or send a text message.
Chronic illness can be isolating. It can eat away at our lives piece by piece, and we don’t always realize how cloistered we’ve become until it’s blatantly obvious. Unfortunately, we have come to expect impatience from strangers and dead ends in the simplest aspects of our lives. Even a small gesture can go a long way toward brightening somebody’s day.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.