A year ago we got married and I wish I could tell you it was the best year of my life… but I can’t.
I read a blog post that really hit home with me last week, which you can read here. It’s a really great article about the realities of living with chronic illness or pain. But really it made me think about how chronic illness is viewed in our society. The author is completely right… movies like The Fault In Our Stars and A Walk to Remember give us unrealistic expectations about illness. She writes:
“I think the reason why people today love to hear about cancer stories is because they are just that. They are stories. They have a beginning, middle, and an end. While that end may not be a happy one, people are satisfied with closure. But my story doesn’t have an end. And people don’t seem to like stories without an ending” (Lauren Ann from Thought Catalog, 2014).
But she forgot one important part. Something that may be far more important than individual pain, or how chronic illness means not dying, but never getting better. Something most of us with chronic illness don’t want to discuss or admit.
The pain that our illness cost you, my husband, my love.
Or any one of our of loved ones, really.
So I’ll share our story, because it is a true love story.
Of what it’s like to love someone with a chronic illness.
This story is neither made of tragedy nor drama.
But it’s real and it’s ours.
When we met, both of us weren’t looking for love. In fact,we had lost all hope that true love even existed. But we were proven wrong, although both cautious and deliberate with one another. I was scared. I know you were too.
I remember the day I fell in love with you. It was 4th of July. The first weekend I had spent in the town we now both call home. Our first kiss. Our first everything. And from then on, we couldn’t be apart.
Our first year together was fun. I was even fun. I had never smiled so much until I had met you. My life had changed, I was happy. But I was also hiding secrets…not only from you but the world. Maybe even myself. I didn’t want to feel sick all the time. I tried to ignore the pain the best I could, which was easy most days because it was invisible and not as bad is it now. I always had an excuse to hide my secret, like when we went to our first show together, Mayhem Festival, and I passed out multiple times. I said it was from the heat, which wasn’t technically a lie, but it wasn’t unexpected or the first time either.
I thought if I could hide the pain forever, then it would go away. It was only in my head, after all. And we were happy… I was happy, something I hadn’t known in a long time.
We had some great years. The kind that made everyone wish for a love like ours. But it got harder as time went on. Living together, it became harder to hide or excuse how I felt. And the worse I felt, at least in the beginning, the harder it was on our relationship.
When I first discussed my chronic illness with you , you didn’t believe me. Although I was hurt because I thought I could share everything with you, I understood why and I was used to it. I’ve been told my whole life that it was just anxiety, or that I was being overly dramatic.
But when my illness started progressing faster and faster, and symptoms started to become visible, you were the first to admit you were wrong. Finally, someone who believed me…believed in me. And since that day, have been my primary support.
I’m lucky, because most people in this world will never find a love like ours, or a man like you. Who will bring me coffee in the morning, or drive me to appointments or on simple errands when I’m not well enough to make it there on my own. Or surprising me with things, like Popsicles, in hopes that it won’t make me sick and I’ll feel better.
Unfortunately, by loving me, you’re also stuck with my illness. While I didn’t expect it to ever fully go away, I didn’t expect it to be this bad either. You loved me through the anger and the depression that my illness has caused me. Every time I wanted (and still want) to give up, you give me reasons to keep going… to keep looking for answer.
And I owe you an apology, because I have taken your love and support for granted most days. Early in our relationship I thought of you as the selfish one, always putting your friends or partying in front of me. But now I am the selfish one, putting nearly everything in my life, including my illness, before you. More times than not, I am moody, angry, or sad because I can’t live the life I want to live with you, or be the girl you fell in love with. I felt (and sometimes still do) that you weren’t listening, or that you didn’t understand what it’s like to always be sick. To no longer have a good day. To know happiness finally, after years of pain, only to have it taken away. I’ve taken my emotions out on you, when really I am angry at myself… at being sick… of not having control of this life anymore.
Somehow, you continued to love me anyway. Even through the times I am unlovable.
I’ll never be the perfect wife and our life together will unfortunately not include all of our dreams due me being sick. I feel guilty and ashamed for this. Being sick impacts both us, something I often forget. But I’m grateful that out of everybody, you were willing to accept these sacrifices and the uncertainty for what my chronic illness would hold.
So while we may not be able to celebrate our first anniversary together in the same way that traditional couples do, it didn’t mean that our love story means any less. Perhaps, because this story doesn’t have a happy or sad ending either, it is more interesting because it’s left as a mystery. And just like my illness, we’re left continuing to guess what will happen next.
Happy first of the many anniversaries left in this journey.