Sharing Your Chronic Illness with a Significant Other
One question I commonly get asked is “How did you share your heart defect with your significant other?” It's a very serious question especially when you are living with a chronic illness. Your illness is a part of you each and every day. It’s part of your story, and when you are in a serious relationship with someone and forever is a possibility together, your chronic illness can also alter their life and the plans they may have foreseen. You truly have to find someone that wants to be a part of that journey, and it starts with learning how to have difficult conversations with your significant other.
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It was my freshman year of high school when I found out that having children might not be a possibility for me. After I was told these things, it felt like a gut punch. At that time in life when everything felt like it was just beginning for me, it was a real killer to my confidence. Going forward, it made me very insecure about the longevity of any relationship I was in. I was always fearful that I would be a burden to my future husband, and possibly a disruption to his plans. And I never wanted to be THAT wife or make him resent me later in life.
Now, I totally know that adoption and surrogacy are options, and I have definitely researched those alternatives as I have gotten older. But when you are 14 years old and in your first relationship, those aren’t really items that come to mind. It kinds of feels like part of your worth as a woman is gone. That is totally not true about where our worth comes from as women, but those thoughts definitely started to seep into my mind at that time in my life. And learning how to have difficult conversations about my chronic illness was something I was still learning.
I was always open with boyfriends about my heart’s story and the journey that it has had. Telling that part of my story always came very easily because it was such a huge part of me that I was truly proud of. I felt like I had boyfriends that thought it was a cool “story” or just a “testimony” that made me unique, but they couldn’t see that this story wasn’t just all in the past. It may have molded my past, but I was still living it. It wasn’t something that was over. I think that when I met Devin, my now husband, that was a BIG difference that I saw in him and the way he treated me.
Your story is a HUGE part of who you are and what has formed you. Finding someone that not only cares about you but also appreciates all you have been through isn’t easy. Devin not only loved me, but he loved my story from the beginning. He never saw my heart problem as a threat to the life he wanted to lead. He loved me regardless of knowing the possible journey ahead. My heart story was actually one of the first things I told him about before we even started dating. Where some could have seen weakness or vulnerabilities they didn’t want to deal with, Devin saw my story as a strength. He was also the first person I dated that I felt most comfortable with talking about the risks of pregnancy or even the complications of my heart down the road. “Let’s live in the present and deal with whatever comes in the future together” Devin would always tell me. He truly accepted my heart’s journey and even the altering it could do to HIS plans. He was truly invested in my scars and the battle ahead. That’s when I knew that he was MY GUY.
Be Upfront RIGHT AWAY & Share Your Vulnerabilities
We had that difficult conversation early on. I told Devin BEFORE we were even dating about my heart and its complications. This was so important for me, and the way he reacted was a make or break for me in our relationship. When you get to that point in a relationship or truly think that you have found the person you will spend the rest of your life with, you need to have that conversation about how your life's journey may affect them. In that conversation, you need to address the other person's dreams and well-being and be honest about the realities of those dreams. Do not try to skirt around anything, even if it just a "risk" or "possibility." Like for me. Its not a guarantee my heart will be able to go through the stress of a pregnancy and child birth, and we don't know if my heart problem will get passed on to our children. Those are VERY real risks, and even though they aren't definite, they need to be communicated. You need to ask them, how that news makes them feel and sometimes you may need to give them space to process it all. That is okay!
Another big factor is communicating with your significant other when you are feeling something funny with your heart. I remember my junior year of college, I felt some very weird flutters with my heart before I went into an accounting exam. I think was part lack of sleep and part anxiouness, but nevertheless, I texted Devin right before the exam telling him my symptoms and how I was feeling. As soon as I came out of that test, Devin had left his work office and was right outside the classroom waiting for me. He didn't take it lightly, and he showed up for me. He made sure I got home and made sure my symptoms went away. Fortunately, they did and it didn't turn into a scare, but I know if it had, he would be right beside me. I think sometimes, we try to put up brave fronts and appear that we have it all together, especially when you are dating someone. We don't want to show "weakness" or vulnerability, but honestly, it's those moments of adversity and sharing vulnerability that lead to strong intimate relationships with your significant other.
Let Them Be A Part of Appointments & Research
Something I wish I had done when Devin and I were dating was inviting him to my annual heart check-ups. In college, I was still going to my pediatric cardiologist with my parents each year, so I didn't really think about it. But if I were to go back, I would have him there. This year will be the first year that Devin will be at my heart appointment with my new adult cardiologist. (Our first year of marriage, Devin got sick so he couldn't come to my appointment that year. 😉) It's important for your significant other to really understand your heart diagnosis. Let them ask questions of your cardiologist or have your cardiologist explain your heart condition to them and what symptoms to be cautious of. When they do an EKG or ultrasound of your heart, ask the tech questions and have them explain to your significant other what is happening as your heart beats. This allows them to not only learn more about your condition but be even more involved.
Since my high school days when it was first brought to my attention that having biological kids may not be in the cards for me, I have been able to talk more with my new cardiologists. At my last cardiology visit, my doctor actually told me that with my heart’s current health, I would still be a high-risk pregnancy, BUT I would be healthy enough to carry a baby. Now there are other factors to consider like heart genetics and what a high-risk pregnancy will look like, but Devin and I are trusting God’s timing and taking the necessary steps to learn more about those risks as we approach those years. Together, we are doing that research over the next so many years to get the answers we would like from specialists, and it's important that we are both a part of that research and any appointments.
Be Understanding & Extend Grace
When you have a chronic illness, you want to be with someone that is your teammate. You are learning to do life together, and when a chronic illness is involved that always adds a layer of fun. 🤪 You need to remember, they may understand your heart condition and your needs, but they have not lived with a chronic illness themselves. Knowing how to care for and meet the needs of someone with a chronic illness is still different than actually living with a chronic illness. That means you need to give them grace. As with any relationship, there will be misunderstandings that happen. That is normal. As individuals with a chronic illness, we also need to be understanding of our significant others, their needs, their feelings and give them grace when they might not quite understand something with our illness. Be intentional about letting them know you are grateful for them and for the team you form. Hey, while you are reading this post, stop and give your significant other a BIG hug or shoot them a quick "thank you text." You are both on this journey together which means you BOTH are incredible and strong people. You get to fight together, and that's stinking amazing!