How to have a relationship with someone who has endometriosis

I try to be open about my illness, but I digress, I often hide details because some of them can be rather unsettling. This is not conducive to having a relationship with anyone, friend or partner. I know I’m doing myself no favors by keeping my doors closed. So many people don’t quite understand the illness, and then they’re clueless what to do or how to act when you’ve told them. Here’s a basic guideline to having a successful relationship when your friend or partner has endo.

Don’t treat me like I’m broken or a damsel in distress. I’m not. I may have a chronic illness, but I’m still a PERSON with one. See the person please, not my disease.

Don’t assume you know my story if I haven’t told it to you. While my story is similar to other girls, it’s only that — similar. We don’t have the same stories.

Don’t shy away when you’re scared because you don’t know what to do or how to act. This makes me feel as though you’ve lost interest in me or you don’t care; both which I will blame myself for.

Don’t be insensate. Understand there are times that I’ll need time to myself. Whether that’s to gather my thoughts, rest, or because I just need to be alone. Please respect these times and don’t push me to interact.

Don’t minimize what I go through, especially if you don’t have the illness. For 20 years I’ve repeated myself to more doctors than I can count, friends, partners, and strangers. I could write a 300 page novel by this point. I know you don’t always understand…and that’s okay….but when you don’t….

Do ask me questions if there’s something you want to know. I don’t expect you to know everything about my illness, or even me. If I say something and you don’t know what it means and you want to- ASK ME! I do not mind explaining anything to anyone.

Do ask me how I’m doing. A lot of us get quiet because we feel like our brains are pure static and electrocuting us. We don’t want to overwhelm you and we assume if you don’t ask; you don’t want to know. Plus, sometimes a “How are you doing/feeling” can turn our days around. In the end, we just want to know that someone cares.

Do understand that there are times I feel absolutely insane. When I’m late for my estrogen, as an example, I get full menopause symptoms. I’m cranky, restless, I cry for no reason for hours at a time. I feel ugly, and I hurt. When I get symptomatic, the worst thing you could do is joke about it. You do not understand the things going through my brain and I genuinely feel like something you’d pick off your shoe- mentally and physically. If you crack jokes, it brings credence to my beliefs that I’m a horrible person. Just let me know that you understand I’m not feeling my best, and let me know you’re there if I need to talk to anyone (or an alibi).

The above traits are applicable to both friends and life partners, boyfriends, girlfriends, spouses. But a lot of times, I find that it’s the significant others that we try to wear masks around the most. It’s a horrible defense mechanism, and in our deluded ways of thinking, it’s also the best way to save you from any pain. So for those involved romantically with someone who has endo.

Do know that sometimes I’m embarrassed and I don’t know what to say. When I have to take breaks hiking, dancing, or stop 5072957 times to pee on a road trip- it’s embarrassing. It’s hard to explain that sometimes I just get tired, or that sitting for a long time is hard, and that sometimes it hurts.

Do know that I want to be seen as your equal. I know that I can be a real pain sometimes. And that I can be fine at 8 but not at 10. I know I throw toddler tantrums, and I know that I’m a lot of work. But if you can look past that; please don’t make me feel like I’m a child that you have to take care of…but…

Do offer to take care of me. If I’m having a rough day, offer me words of encouragement. Remind me it’s a bad day, not a bad life. The thought process revolves enough around my limitations and if they bother you. Call to say hello, or that you’re thinking of me. Draw a silly picture and text a photo.

Do reach out if you know something’s wrong. If you ask what’s wrong and we say “Nothing”, that usually translates into we don’t want to tell you because we are worried that it’s going to cause issues.

Do let us lay on your chest and watch a movie and sometimes do nothing more than “be”. I can find the most peace knowing that I’m in the company of someone who’s content just being around me and that we don’t have to take over the world every day.

Do help me take over the world. Be a partner. Be real. Be ready to snuggle or ready to go skiing on no notice. But bring an extra jacket because I get cold easy.

Don’t assume I know how you feel about me or being with someone who has a chronic illness. Does it affect you? Do you not even think about it? Do you want to help or does it never cross your mind until I mention it? I need you to communicate with me and not have my mind run rampant with assumptions.

Don’t tell me that it’s going to all work out. It is not empirically possible until there’s a cure that it’ll go away. There’s going to be good days, there’s going to be bad days. You need to decide which days you’re going to be there for. If you’re not willing to be there for my bad days, please don’t be there for my good days. I need someone that will be there for both. So if I want to go skiing, we climb mountains, and if I want to just lay with you and be…that’s what we can do. I need to know that it only matters that you’re with me, and not what we do.

Do know that your happiness is my priority. I don’t want to cause you any stress or drama, and there’s a lot of both with a chronic illness. I need you to know that on days when I’m quiet, or when I seem disconnected, that it really has nothing to do with you, and everything to do with me. And it’s a vicious cycle, because despite my being distant, it’s likely you that I wish were with me. Know that sometimes, I may push you away when I really want to pull you closer.

Don’t take it personally. I know that is easier said than done. I know it’s hard. I know there are times that you don’t understand me or what I’m doing. Please, talk to me. Let me know that you’re there and you don’t want to be pushed away. Let us know that you truly care and want to help us solve problems. And we’ll help you solve yours.

Do know that we consider us a team. You have my back, I have your back. We are united, and I will fight for you and with you should you ever need me. If you need me…tell me.

Do know you’re needed here.

Do know how much you mean to me. It’s really hard to be open with people in your life and tell them what value they have. It’s that balloon theory. We push when we want to pull, we’re afraid if we pull that YOU will push. Even if we don’t come right out and say it; know you are so so important to us if you’re in our lives.

Est-ce que tu m’aimes? Don’t tell me you love me if you don’t. Don’t tell me you love me if you aren’t going to stay. Don’t tell me that you love me until you’ve seen me at my worst, in pain, crying on the bed because I hate my body so much and never even considered wanting to be anywhere else than with me at that moment. Don’t tell me you love me when we’re at our apex and the world is at our fingertips. Don’t tell me you love me until you’ve seen me at my lowest and felt your heart break because you’d rather take the pain than watch me be in it. Just don’t.

If you’re involved with someone with a chronic illness, regardless of level, the most important trait we need you to have is compassion. We need you to be patient. We need you to be honest.

I’ve said previously that it’s imperative that you understand that to us, we are burdens. You are not people we pass time with. You are people that we trust, care about, and value. We love all of you to one degree or another.

I think one of the most selfish things we do in this world is not share love with the people that matter. For everyone in my life, they each hold a certain amount of my heart. It’s reserved for them and the memories we share. I don’t think there’s anything wrong with loving a thousand different people a thousand different ways. Maybe it isn’t even love, maybe it’s respect. You respect that person’s part in your story.

I love. I have loved. I will love. Simplicity at its finest.

Just because we’re sick doesn’t mean it has to be hard. It doesn’t mean it has to be different than your other friends, or partners. Sure, it may be. But isn’t that what life is about? Finding yourself with another person, and sharing your story with them while letting them take up a few pages, a chapter, or maybe the rest of your book?

Ah, who knows how long each person will be in our lives. But I’m thankful for the ones in my story. Even the bad times. Because of them, I’ve blended myself into a beautiful chaotic mess that loves and respects.

That’s all we want in return. Be understanding. Be kind. Match our loyalty. Prove to us that you care and that we aren’t someone that you’re hanging out with while you’re waiting for something better.

Maybe I am better. Maybe I’m the best. Maybe I’m the worst.

But I’m me. And that’s all I’ll ever try to be.

Take me at my best, take me at my worst…or please, leave me be.

I have no time for things with no soul.

Life and love are both a bittersweet symphony. Won’t you stay and listen for a while? It may become your favorite song ❤