What I Need My Future Spouse to Understand About My Chronic Illness

To my future spouse,

I want you to understand what I need from you, and one of those things is that I need you to understand. My life is complicated. It’s confusing, and it’s dramatic. There’s no way around
it. I’m not going to pretend it’s easy because it’s not. Loving me will definitely not be easy, but here’s the thing: it will be worth it.

I have a chronic illness. It comes in waves, and it’s not going to get better. I need you to accept that, and accept the fact that you cannot do anything to make it go away. That’s the first thing: you cannot fix me, you cannot change my mind or outlook or how I feel. I know as a guy, you will want to fix it. I know that “just being there” is going to make you uncomfortable. So here’s what you can do for me instead.

Be my advocate. When I’m in a situation where I cannot advocate for myself, I need you to advocate for me. I need you to be my voice for the doctors, believe me when I hurt, and fight for me when I can’t fight for myself. I need you to know what I’m allergic to and what works; I need you to know that I can’t have certain types of stitches or sedatives, and all those random things that doctors don’t like to listen to, but you have to push them for me. Learn about the condition, learn the contraindications, learn everything about it and how to handle it.

Know that I am not weak. Weak is the last thing I am (well, physically, but I mean mentally). I may be sad or angry sometimes, I may have anxiety or pain, but I have been through so many things that have made me a stronger person than most people ever will be. Don’t treat me like I’m breakable. I will have moments when I need compassion, and in those moments I expect your quiet love to hold me while I cry. There will be times when I need you to protect me and defend me, but let me decide if I need that or if I can do it myself.

Don’t be consumed by my illness (and I won’t be either). Realistically, I know that it will affect every aspect of our lives. That said, I don’t want it to be the subject of every conversation; I don’t want it to be our obsession. If it comes up, it comes up. If I hurt, I will tell you, but I don’t want to be babied and I don’t want it to define us. I want to go out on a date when I can and just have “regular” conversation. Let’s talk doctor appointments another time, not at the dinner table. At the dinner table, let’s talk about your day and my day and share funny stories. I want to keep those two parts of my life separate when I can; I want to have my “spoonie” friends to talk to so that you and I can have a semi-normal relationship.

Understand that it hurts me more than just physically. I’ve given up dreams and goals, which is sad. My life has changed drastically from what I wanted it to be. There will be days where I cannot do some of the simplest things, and it does hurt my pride. It makes me sad to think about the things I have lost and the things I cannot do. There will be days that I feel guilty for bringing you down, or for being a burden when I can’t work. You have to be sensitive on these days, and I expect you to be.

It’s OK to wish I wasn’t sick. I wish I wasn’t sick either. There will be bad days where one or both of us will hate my body for what it can’t do. The thing is if you love me, you will love me anyway. We can wish together that we had a different life, but in the end you do need to be happy with the life we have together. The whole concept of “loving a disabled person makes you a saint” isn’t true, and if you see yourself that way then you need to reconsider why you’re with me. Just make sure that you see me for who I am and what I can do, rather than who I’m not, who I used to be, or who you wish I was. Because the truth is, you can’t change me.

Know that because of what I have gone through, I am an incredibly compassionate and loving person. I know what it means to love fully because that’s exactly what hasn’t happened to me before. People don’t accept me. People judge me and aren’t patient with me. People make me feel bad about myself, and because of all of this, I now know how to do the opposite for other people. This is what makes me a wonderful partner; I will love unconditionally and wholeheartedly.

Lastly, you’re not here to take over the responsibility of my disability. I have full responsibility of that. I have my entire life and I don’t need you to take care of it for me. There will be days when I need you to do certain things for me, but in general I can take care of myself and my appointments and medications. You are here to be my husband, to have fun with me, protect me when I need help, hold me when I am sad, and to respect me and love me unconditionally.

Sincerely,

Your future “zebra” wife