7 Things Your Chronically Ill Significant Other Wants You to Know

I met my husband freshman year of high school. He was nice and knew how to make me smile. We stayed good friends up until our senior years of high school — that’s when everything changed. I had always been sick, but this time it was different. I missed three months of my senior year because my body couldn’t keep down food. For three months I consumed almost exclusively banana milkshakes. Over that entire time only one of my friends stayed by my side; two years later I married him.

Most people don’t understand what it means to be chronically ill. Sure, maybe they get the definition of it, but they don’t understand how it changes your life. For me, for instance, it means separating myself from everyone else. I hate being ill, and feel that by creating friendships I will disappoint people later down the road. I know some time or another I will be too sick to stick to the plans. Or maybe I will make them miserable because my body can’t keep up. Or maybe I will freak them out because my blood pressure will drop too low because I stood too long. Or maybe it will be the puking that grosses them out too much because my body will reject the food we just enjoyed. Whatever it is, in time it will happen, it always does.

Because of this, I count on my husband for pretty much everything in life. I count on him to be my strength, my best friend, and my caretaker. I think many people who are chronically ill are the same way. As much as our significant others understand, they will never truly understand everything, so let me try to help if only a little.

1. We know you don’t always get it.

And that’s OK. You don’t have to understand every time we cry because we couldn’t sleep through the night or because walking hurts. At some point almost every simple task can be upsetting. It just matters that you’re there for me as I grieve. Nothing makes me smile more than when my husband crawls back in bed and holds me when I can’t manage to get out of bed on my own.

2. Sometimes we may push you away.

I’m extremely sorry about that. It’s not because I don’t love you, because believe me, I do. It’s because sometimes these problems cause so much emotional pain and I don’t want you to suffer. It isn’t fair that you give everything and I cause you problems. Because of that, I may try to protect you by pushing you away. I found out I would have trouble having children at a young age. I remember being 17 and crying, telling my then-boyfriend that we may never be able to have kids. For a while I distanced myself because I knew I might take away something he truly wants out of life. He didn’t let me walk away. I remember him saying he wants me and whatever comes with it, no matter what. Now that we’re married he still says the same thing. That moment is something I will never forget.

3. We may keep secrets from you.

But only to protect you. If I wake up in the middle of the night and can’t sleep I’ll sneak to the living room and come back before you wake up. I may take extra pain medication behind your back when we are doing the things you love that cause me extra pain. I want to enjoy the things you love with me, even if I suffer a little more. Sometimes I cry in the bath because I don’t want to burden you. We want you to enjoy life as much as possible so hiding the little things that may hurt you are a tiny sacrifice compared to yours.

4. We try our hardest to do everything on our own.

Even though it doesn’t always seem like it. I know getting out of bed is easy for most people but it isn’t always for us. We may try to do things on our own before asking for your help. Believe it or not, I hate having to depend on you all the time. I don’t like needing help in the shower, or when I can’t carry something by myself. Just know that we do appreciate it when you go out of your way for us.

5. We know that sometimes you need a break.

And I understand. It’s OK that you need a moment to yourself every once in a while. We all need a moment; remember when I mentioned crying in the bath? It’s OK for you to have a day to yourself, to enjoy something you love. I don’t want to take everything good away from you. Believe it or not, we want you to be happy. Go out with your friends, get a massage, play video games, read a book, do something just for you. I’ll be OK on my own for a little while.

6. We need a break sometimes, too.

And hope you understand. You take such good care of us, but sometimes we may need to be a little bit reckless. We know going on a hike might bite us in the butt later, but we want to enjoy life. Doctors are constantly trying to tell us want we can’t do, but sometimes you need to let us break the rules. I know what I can and can’t do, and sometimes I want to do it even if it causes extra pain. If I don’t get to do these things every now and again it starts to wear on me.

7. We will never be able to thank you enough.

Even though we will try to. We know you don’t have to be here. You didn’t have say yes. You don’t have to go through all the emotions that we do. You don’t have to wait on the doctor. You don’t have to put up with all the horrible side effects. You don’t have to sacrifice so much for us. But you chose to. You took on the challenge of caring for us when you could have got off “easy.” Know that no matter how bad it gets, we respect, love, and appreciate you more than you could ever fully understand. Thank you for everything you do.

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