A few months ago, my husband and I had our first real fight after nearly a decade of being together. It had to do really with my lack of communication on how I’m doing. As much as I help others with communication skills within relationships, I’m not great at verbally communicating my own illness fun. It’s how I started writing about everything so, ya know… I just wrote this to him as a way to share more of my feels. This piece originally appeared on our Medium publication in February.
I know it’s hard for you to see what I’m going through. Invisible illnesses don’t make it easy for people to see all the ways they impact my life. I’ve gotten pretty good at coping with my illness fun, too, which doesn’t make it easy to tell when I’m struggling. Like a prey animal, I hide when my pain increases because it makes me vulnerable. I become an easy target for people to mock or harm.
Despite all this work I do with others on communication, I’m not great at it myself. I know that if I communicated what I’m dealing with better, it would improve both of our lives. It’s hard, though.
Just like showing my illness fun is vulnerable, talking about it is, too… except on steroids.
It’s easy and commonplace for me to notice my own pain or how my illnesses are being exacerbated on any given day. I have to do this in order to survive my day. Living is full of calculations for me —
Which extra medications do I take at which times? When do I use the ‘big gun’ medicines? Which of my non-medicinal relief methods can help, and in which order should I use them?
This has all become as natural to me as breathing.
Everything I do and experience is colored by pain and illness, even on the best days. When I talk about all of this, it reminds me how sick I am. It’s just a reminder of how differently you and I experience life. I know that my illnesses and pain doesn’t mean I’m lesser than you. Still, my depression and anxiety love to play on that.
It makes me scared, too. I get scared about how sick I am and how many more rough than easy days I have lately. I fear for what this means for my future — our future. My anxiety takes over and wonders:
Are my medications working? Do we have to switch again? I’m running out of options. How long will I live, then?
And then I wonder how long you’ll stay.
You say you won’t leave. Part of me knows you won’t. Still… there is so much evidence against relationships and illness. I can’t help but worry about this. How sick can I get before you decide it’s too much, even if you don’t tell me?
When I can’t cope as well with all this, it also makes me feel like a failure.
I’ve been sick since I was five. I’m so adept at hiding how painful existing is for me. Even physicians often don’t believe how pained I am because I smile and laugh.
The truth is, if I didn’t do those things, if I didn’t hide how I’m doing, I wouldn’t survive. If I had to talk about every single thing I endure and the pain I experience, it would remind me of how subpar all this makes me feel. It’s not easy on my mental health.
I know that my lack of communication sometimes makes living with me difficult. I promise that I will work on communicating better, even if we use code words for things. I will try to be more open about how I’m doing, what I can do, and what I need.
But I need something from you.
When I talk about my pain and illness state, please listen. Ask me questions. Hold my hand. Hold me. Recognize how hard I’m trying to break this habit of hiding.
It isn’t easy and it won’t happen overnight, but I’m trying.