To the Husband Who Didn’t Choose to Have a Wife With Chronic Illness

I know this isn’t how you thought it would be. I know this isn’t how you envisioned our life together. When you married me, I know you didn’t picture this life for us. I know because I didn’t picture this life for us. I wish it was different, but I can’t even imagine what you wish. I can’t help but think you didn’t know what you were getting into when you married me. I can’t help but think you might have drawn the short end of the stick in our marriage. I can’t help but think I’m not the wife you pictured.

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As 21-year-old kids, we saw a bright future ahead of us. We talked about the places we would travel to, the jobs we would have, and we even picked out names for the three children we were going to have. There was so much that we wanted to do. Time was on our side. We were so young.

Yet here we are, 26 yet living like we are years beyond our age. I’m sure you didn’t picture taking care of me for weeks that turned into years or staying in with me every night I’m too sick to leave even the couch. I’m sure you didn’t picture your wife nearly bedridden for days on end. I’m sure you didn’t picture your life like this.

With just one word, our lives were changed forever. It wasn’t just my life that changed when I heard the word gastroparesis. Your life was changed, too. My heart breaks for the burden I have put on you — a burden that is enormous for someone of your age. At 24 years old, you became not just a husband, but a caretaker.

You don’t see it, but my heart aches every time I can’t meet your needs like a “normal” wife would. Because, you see, I’m not a “normal” wife, as I’m sure you’ve figured out by now. When I forget to prepare your lunch, I’m embarrassed that I can’t help you when you do so much for me. When I cancel a date or a family event, I’m afraid you will think I don’t care. When you eat cereal for dinner, I’m ashamed I can’t cook for you like other wives would.

I’m humiliated every day you come home and I’m still in my pajamas or haven’t even moved from the bed. Believe me, I don’t want you seeing me like this, but I don’t know what else to do. I am so weak. I have no energy. And I hurt so badly. Yet I want you to see me the way you used to and be proud to call me your wife.

Please know that when I lash out in anger, I’m not really angry with you. I’m not upset because you let the milk go bad or forgot to take out the trash. Believe me, it’s not really those things. I’m upset that I can’t be better for you. I’m upset that I’ve become a burden in every way — emotionally, physically, financially. And I’m upset that my body is failing
me at only 26. Please be patient with me. I’m trying. I’m adjusting. This is all new for me, too.

There will be days I don’t want to talk or seem distant. In those times, I just want you to hold me. Reach out your hand and grab mine. Do something so I know you’re still there.

There will be times I leave the room quickly and I’m sure you’re wondering why. This means the pain has reached a level I can no longer tolerate. I will probably be curled up on the bathroom floor with tears streaming down my face. When this happens, come find me. I need you most in these moments.

There will be times you don’t know what to do. I know you feel helpless. You’ve told me as much in the past. I don’t need you to have a solution. I just need you to be there for me. Give me a hug. Let me cry. Tell me everything will be OK even when neither of us really believes it. 

There will be times I’m angry about my diagnosis. Sometimes even the sight of food upsets me. You see, food controls me. I need it to survive yet it feels like a poison when I ingest it. Please understand that right now I don’t even want to be around food yet it surrounds me. Be patient with me as I fight this battle.

There will be times I feel guilty. I feel guilty every Sunday when you go to church alone as I lay curled up in bed. I feel guilty when you go to a family event without me. I feel guilty because I know I am a financial burden. But most of all, I feel guilty that I changed your life forever. Please tell me it’s not my fault I’m sick. Don’t ever stop telling me.

There will be times I feel unattractive. Every day I wake up to sunken eyes and a lifeless pallor. Remind me that you think I’m beautiful. Even when I’m wearing sweat pants with messy hair and a face sans makeup, remind me why you fell in love with me. I need to hear it.

There will be times you think I don’t notice all you do for me. I know this sickness consumes me and I’m sorry. Remember that I love you and appreciate you more than you could ever know.

I know you didn’t choose this, but you’re choosing it now. Even though on our wedding day you didn’t know I would become disabled, you know now. Yet you stayed with me. You could have left, but you chose to stay with me. For that, I am eternally grateful. This journey is going to be hard; I’m not going to lie. But it will be so much easier knowing that you’re by my side.

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