To My Significant Other: This Is What I Need in a Partner as Someone With Chronic Illness

I hesitate to use a personal pronoun and say that I speak on behalf of the entire chronic illness community. We are a varied group with many differences but one major similarity — we are perpetually sick. While there are few topics that I feel informed enough to speak so broadly for all of us, I feel that our need for positive relationships is universal. So, chronic illness community, if you don’t mind, let me borrow our collective voices for a few minutes to tell the world what we need in a partner.

Dear Spouse, Partner, or Significant Other,

Hey. You see me every day — even if you don’t see the physical author of this letter. I’m your husband, wife, girlfriend or boyfriend. I’m the person who feels bad more often than I feel good. I know I’m difficult to deal with — I’m grumpy; I’m whiny. Some days I’m so unbelievably disgruntled that it’s impossible to please me. I’m sorry. Seriously, I didn’t imagine life would be like this. I’m like you. I grew up with the fantasy of a happily ever after, too. You were expecting a happily ever after, right?

Here’s the thing. I still expect my happily ever after. It’s just a little interrupted by my circumstances. You see, in my quest for happiness — my quest for the ultimate romance — I also have to deal with the fact that my body just doesn’t work quite right. I realize that if you’ve accepted me, you’ve probably accepted my host of infirmities. Thanks. Seriously, that helps, but I need you to realize our love story has been somewhat interrupted by the fact that I faint and weep and fall and leak.

There are two types of readers to this letter, and both types are without excuse. The first type is the significant other who knew I was sick before he/she entered into a relationship with me. If that’s the case, then this is easier. You knew what you were getting into. You signed off on this. Nothing was hidden; my situation was explicit. You engaged in a relationship with me — and my illness. Even though all promises for our union were made to me, you also got my “problem child” of an illness in the deal. Sorry. That sucks for you, really. However, that means that you knew what was up. You knew that our lives may never be as straightforward and obvious as other couples. You knew that what I bring to this relationship may be complicated at best. You knew that there would be good days and bad days. In spite of all that, you accepted me anyway. From the bottom of my heart, I thank you. Please know I hoped and prayed someone like you would come along. I always hoped someone would see me in spite of my challenges and love me anyway. So, seriously, you’re exactly what I wanted when I dreamed of my happily ever after.

The other type of significant other is the type that was as blindsided by illness as I was. Everything was great — we were doing our couple thing — and I fell apart. Oops, my bad. I assure you, this was not my intention. At no point in our relationship did I want to pull a “bait and switch.” Nope, this just happened, and I’m sorry. I feel for you. Here’s the truth — you have two choices: get on board or get out of the way. I assure you, I did not want to introduce chronic illness into your life or mine, but it’s here. It’s a part of me I can’t take back. If you can choose to love me — and my problem child of an illness — in spite of the surprise that is to both of us, that’s awesome. Heck, we can take my problem child and make it ours. Let’s face this thing together and show my illness that our relationship is stronger than anything it can throw our direction.

If you’re not ready for all that, it’s fine. Adult relationships are hard, and you don’t need anything you aren’t willing to handle. But, please, walk away. Don’t stick around and change your mind. It just confuses everyone. I get that it seems heroic to say you stayed in spite of me falling apart, but if you aren’t in it because you love me, trust me, we’re all better if we say our goodbyes now. It’s not worth your self-seeking martyrdom. It’s cool; I implore you to find a less complicated route into the world of adult relationships. Bye, Felicia.

I’m assuming if you’re still here, you’re the type of significant other that chose to stick with me, regardless of whether you were forewarned about the state of affairs. Welcome to the party. It’s just me, you, and my host of bodily funk kickin’ it now. It’s only fair that I give you a few pointers, because I know this very exclusive party won’t always be fun.

Let’s have fun. Not every day will be easy or fun for us. You get that, and you’re still here. Way to go. Let’s make each day as tolerable as possible though, OK? How can you help? I guess that’s up to the individual circumstance, but here are some hints. If it’s a rough day, my favorite drink or snack is always a nice surprise. A silly text while we are apart helps me remember that you’re thinking about me. Tag me in something senseless on Facebook just to make me laugh. Throw an impromptu dance party in the kitchen while we heat up soup, or binge watch “Family Guy” (or whatever show you know will make me laugh) with me when I feel too sick to move. Regardless of the situation, there is some fun to be had. I promise. We just have to look for it.

Let’s make the good days even better. There are days when I will feel normal, or at least better than I’m accustomed. Let’s make those days awesome. I’ll warn you — it may require some planning. There may be a wheelchair or walker involved. There may even be a nap (or two) along the way. However, our relationship is worth it, right? Let’s make the most of the days when I can do more. There are sports to watch, concerts to attend and restaurants to visit, and I want to do all those things with you. If you put up with me during my bad days, I certainly want to enjoy my good days with you.

Educate yourself. This one is tough. In normal relationships, you get an A+ if you know your significant other’s favorite foods or favorite flower. I’m a little more complicated. If you want to speak to my heart, educate yourself on my illness. Be able to rattle off the name of my disorder as fluently as our address. Try to understand the monster I’m handling. I cannot be completely comfortable with you until I know you can handle all this in a crisis. What do I need from you? Be able to tell a doctor my disorders, my allergies, my general ailments. I realize that’s a lot to ask, but you’re my life line and advocate. When I experience life with you, I’m entrusting my life to you. I need you to be responsible and as educated as possible with it.

I realize all of this is pretty heavy. I can fully appreciate that it would be easier to move on to a less “needy” person. But, I love you. I know I have a part in this relationship. I appreciate all you do, and I promise to do my part. I will do my best to make your bad days as good as possible. I will celebrate your victories. And, I will definitely be your advocate. Life in my world isn’t easy, and I appreciate that you are wading these waters with me. I understand it will be overwhelming at times. We will both make mistakes, because that’s how relationships work. But, if you’ve stuck around this long, I have a feeling you’re a keeper. We will live and learn and laugh and make up and enjoy this chronic life that we’re living.

Follow this journey on CrazyChronicLife.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.