Dating with Chronic Illness(es)

Hello again!

Wow – it has been a long time since my last blog post; I really need to be better about keeping this site up to date, but ya know, shit happens. Since my last update on here, I’ve really been trying my best to manage all of my symptoms between EDS, POTS, endo, & adeno. But lets be real, it’s not easy & I’ve definitely had some hurdles along the way in the last few months. Another update – A 2-year relationship of mine ended, and I had a really good couple of months to reflect on that deeply. I’ll get more into that later, but in March I started dating a new fella who I had actually “met” online 5 years prior on a dating app but never met in person. For those of you who have never been on dating apps, consider yourself blessed….it’s straight up not a good time, if you ask me. Oftentimes, you match with someone, send a few messages to each other or talk for a awhile, and it just ends up fizzling out or you never find time to meet in person, and that’s exactly what happened with Zak & I. Who knew 5 years down the road, we would reconnect and end up dating. Anyways, when my prior relationship ended last year, I was asked multiple times by people if my health affected my relationship. The short answer is yes, but honestly, there’s a lot that goes into dating someone like myself that deals with chronic illness. It’s not something that you should assume everyone has the patience, empathy, and willpower to deal with, and that’s completely okay. So that’s where I got the idea to do a blog post on dating with chronic illness. I think it’s important to discuss because frequently people with chronic illness think of themselves as a burden or that they are unworthy of love for various reasons, and that is absolutely not the case.

First off, let me say, that anything I say in this blog post is not a dig at my most recent ex. I truly believe that he is someone capable and deserving of love, it just wasn’t meant to be with me. Throughout that 2 year relationship, I found myself getting extremely frustrated at the lack of empathy that was portrayed towards me. I am someone that considers myself an independent girl; I enjoy living by myself and being with myself. So, you can imagine, that when my chronic illnesses affect my ability to complete a task or greatly affects how I feel during the day, I don’t particularly enjoy asking for help, feeling dependent on someone else, or letting anyone down. We are often the hardest on ourselves, and I didn’t need anyone else making me feel worse about myself than I already did. The way my ex communicated with me caused me to feel 10x worse most of the time, and that is primarily because he didn’t possess the very important characteristic of empathy. I never expected him to understand my daily pain, but I would be lying if I said I hadn’t wished he could feel what I feel on a daily basis, in order for him to maybe gain some sort of ability to feel empathy. Okay, I’d never wish pain upon someone (as someone that deals with it every single day), but I’m not going to lie…something does light up inside me when I see men squirm in pain when they try those little period simulators that are on the market now. Anyways, I would say the three qualities I walked out of that relationship knowing I wanted in a man were empathy, patience, and the ability to communicate when things get hard (& let’s be real, hard times are bound to happen when chronic illness is involved or just with life in general).

I decided that the next time I got into a relationship, I wasn’t going to accept anything less than those qualities because that’s what I knew I truly needed. Until then, I was truly happy and content being by myself (with Remi, my dog, of course) and focusing on my health and wellness. It’s funny; Not too long before I met Zak, I was telling my coworkers how my dog is my soulmate & that marriage just might not be in the cards for me (that would honestly be fine with me if that is God’s journey for me). But now, I’m head over heels in love with this man, and I’ll tell you why later in this post.

Something I will warn you about if you are someone who receives big time love through words of affirmation like I do…do not, I repeat, DO NOT, fall for love bombing. After ending a 2 year relationship in which I pretty much had to ask for words of affirmation each time I got them, hearing those nice, complimentary words from a guy I was talking to felt good, like really good. I was too caught up in just how good it felt after not having that for so long, that I ignored the signs that he was love bombing me. I am an avid watcher of the show Catfish still (I know, so high school right?), but the psyche of these individuals on the show has just always interested me so much. When watching I have thoughts like, “is this person really that desperate that they didn’t see the signs? I wish this person loved themselves more, and they wouldn’t have fallen for this.” Well, there I was, having fallen for a love bombing situation and feeling really, really stupid and angry at myself. People don’t always have your best intentions in mind, and while it’s nice to always try to see the best in people, you also need to live in reality and realize that there are people out there who just don’t deserve you or your time. I believe the first step to avoiding those types of people is self-love. Had I loved myself more at the time and given myself the words of affirmation I needed, I wouldn’t have fallen for his. At the end of the day, his words were completely empty and misleading, and I ended up feeling lost and empty as well.

Dating in this modern world is tough. Dating with chronic illness is even tougher. If you are someone that is seriously trying to find someone, I would recommend making your intentions clear from the get-go so there’s no confusion. Be honest about your chronic illnesses. This will help weed out all of the assholes or people that cannot handle dating someone with chronic health issues. Let’s be honest; it’s always better to find out in the beginning than 2 or 3 years in. If the person is serious enough about you, they will want to learn about you and hear you out. They will want to help you when they can, even when you don’t want to admit that you need it. They may never be able to completely understand how you feel, or feel the pain you live with, but if they possess empathy, patience, and the ability to communicate, then I think that’s a pretty good start.

2 things that chronic illness has greatly impacted for me: anxiety/depression and my sex life (sorry to my parents if you read this – haha). If you’ve read my earlier blog posts, you’ve seen that I discuss how endo/adeno made sex pretty much unbearable for me at certain times. This can be a huge barrier for intimacy in a relationship, and I think it’s something important to discuss upfront with your partner. With my ex, he was not willing to discuss alternative options with me and found it “weird.” Let me just say this very plainly: if your partner can’t talk about other intimacy options with you instead of vaginal penetrative sex, then that is a BIG red flag, especially when said vaginal sex is causing you so much pain and they know that and can see that. At a certain point in your relationship, you should be able to discuss sex very honestly and openly. If you can’t, then I think there’s an underlying reason as to why that is, and that should be explored. If you have endometriosis, what happens if sex becomes painful for you and you can’t endure it? How will you and your partner still experience intimacy? If you want kids, how are you going to make that happen if you can’t have sex? It’s such a delicate subject, and I will say, I felt like a complete failure when I couldn’t endure the pain of it. At times, I felt worthless, and then I would feel even worse because I had a partner at the time that wouldn’t communicate with me about it or give me any reassurance whatsoever.

When it comes to mental illness, it’s no secret that those with chronic illnesses also struggle with anxiety and depression. I am no exception to that. When you don’t understand what is happening with your body and feel like you can’t fix yourself, anxiety often prevails. When you live in pain every single day of your life, depression sometimes prevails. You can do everything right, and you will still have a flare up, which will leave your mind racing…”Was it something I ate? Could I have done something differently? Did I overdo it? Did I not drink enough water? Should I not have gone out with friends and rested instead? Is there something else going on with me? Is this an endo flare up or do I have BV or a UTI?” The list could go on and on. For example, a couple of months ago I got diagnosed with Epstein Barr Virus (EBV) after being sick on and off for about a month prior, which then turned into mono. The symptoms of this virus have affected me for about 3 months now, and it was really freaking me out that I wasn’t getting better. My mind would be racing every morning when I would wake up and still not feel better, lymph nodes still incredibly swollen, and my body still feeling awful. My mind goes to these crazy places sometimes, and I think of worst case scenarios. I eventually convinced myself that I had some sort of immunodeficiency issue going on that was causing me to not get better. This is not the case, but I had fully convinced myself that it was. It has just taken my body a really long time to get over this virus, and I’ve had a hard time recovering. I’m sure my anxiety didn’t help anything either, but it’s easier said than done to not let your anxiety get the best of you. I take medication for my anxiety; I’ve done therapy, cognitive behavioral techniques, deep breathing, read books and listened to podcasts, whatever – you name it, but it will still roar its nasty roar sometimes. If you’re someone that deals with anxiety/depression, or any other mental illness, it’s important to also be upfront with your partner about those conditions as well. I feel VERY blessed that Zak has been nothing short of AMAZING with me about all of this the last 3 months. So patient, kind, loving, and understanding. I really can’t ask for anything more.

Another tough subject when it comes to chronic illnesses is fertility. 3 of the 4 of my chronic illnesses are associated with infertility: EDS, endometriosis, and adenomyosis. I’m not oblivious to the fact that there is a very good chance that if I decide to have kids one day, I would have a difficult time conceiving or may not be able to at all. Heck, I might eventually just get a hysterectomy, who knows, which would obviously make fertility impossible. This is something I was honest about with Zak from the very beginning because it wouldn’t be fair to him if he had his heart absolutely set on being a dad one day. At this point in time, I have absolutely no desire to be a mom (besides a dog and plant mom), and I don’t really see that changing, but I guess you never know. In about 8 years of working labor and delivery, I definitely had my fill of babies and would often hear coworkers saying things like, “OMG this baby is so cute it’s making my ovaries hurt.” I never once had that feeling. I loved my time of helping babies enter the world and loved cuddles with them during downtime, but it never made me want one of my own. I’m perfectly content being an Auntie to my nephews and being a dog mom, and my partner is on the same page as me and respects that, which is quite the relief I must say.

I have said it over and over again to myself that 2025 is the year of self-love for me, and I’m still working on it. It’s a never-ending process, but an important one. Loving myself helps me remember what I deserve and reminds me not to accept the bare minimum from people. Loving myself is giving myself rest time, even if it means cancelling plans that my partner and I had made. Loving myself is telling myself that I deserve someone like Zak in my life. I’ve heard people say that oftentimes you date people that remind you of your parents. My dad is one of the most understanding, patient, empathetic, and generous people I know. He always knows what to say to calm me down, and he is always there for me when I need him. Zak is the same way, so I guess what they say might be true to some extent. I’m not sure how else to describe it, other than he puts my nervous system at ease, which is something I’ve never experienced before. When I’m shaking or feeling overwhelmed with anxiety, he makes me feel loved and adored, and most of all, worthy of his love. It is truly my hope that everyone finds someone like that eventually, when the time is right.

Dating with chronic illness(es) can be challenging, but it can be done, and it can be absolutely wonderful. I used to think I was trying to “get healthy” by managing my symptoms as best I could and making everyday life changes like sleep, diet, supplements, medications, and exercise. But in reality, I’m not going to “get healthy” in the way I thought I could. These conditions are chronic and some are lifelong. I will likely feel chronic pain for the rest of my life, no matter how hard I try to manage it or “be healthy.” When it comes to dating, my hope was to eventually find someone who would be wiling to go along on this chronic illness roller coaster ride with me and make the best of it. Sure, I could wallow around and feel sorry for myself that I have to deal with these conditions (& let’s be real, I’m human and do have days like that sometimes), or I could make the best of my life and do what I can. Look, we get this ONE precious life. It’s too short to spend it accepting love and behavior that is below your standards or with someone who doesn’t see how perfectly imperfect you are.

I found it funny the other day when someone messaged me on Facebook and said, “Sarah, you live such an amazing life. I am living vicariously through you.” I thought to myself, “Why would she want to live life through me? If she knew what I was feeling each day, she wouldn’t want that.” It was a compliment in a way, but it also reminded me how deceiving social media can be. I don’t post the bad days. I don’t post when I’m writhing in pain or can’t get out of bed. Maybe that’s a bad thing because it doesn’t depict the true reality of my life? But then again, who would want to look at posts of me in bed with a heating pad on turned up as high as it can go? Or me at physical therapy trying to strengthen my joints and my pelvic floor muscles? Or when I’m at my monthly doctor appointments and check ups? Sometimes I feel like I’m “fooling people” in a way because my social media is basically like a highlight reel. But at the end of the day, I choose who I want to share those intimate moments and struggles with, and they are the people who have stuck with me through it all.

Welp this has been another long one – it happens every time. Maybe if I posted on this blog more, I would have shorter entries. Anyways, just a few major points to summarize everything up, and thank you if you’ve gotten this far! First, time is precious and don’t waste it on someone that can’t see that you are precious too. Find someone that sees your scars, whether they are emotional scars or physical ones, and doesn’t flinch at them. Know your love languages and find out your partner’s. Focus on loving yourself and love will come your way. Don’t be afraid to be alone until you find exactly what you were always hoping and praying for. Please don’t settle. Whether you believe in God or the Universe or whatever, there is a plan for you. You are SO worthy of love, whether you believe it yet or not, and trust the timing of your life. Things always have a way of working themselves out. It sounds cliche, but it’s true. If you struggle with anxiety like I do, try to not let it get in the way of your happiness. Each day is a gift, and anxiety tries to rob you of your enjoyment of those days. Don’t give it the satisfaction; get out there & get what you deserve ❤

As always, I’m here for you! Sending all of the good vibes your way.

Peace & love, Sarah