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The Key to Relationships With a Chronic Illness or Rare Disease

In the rare disease/chronic illness community, one topic that seems to be brought up time and time again is relationships: personal, professional, platonic or romantic. That being said, I don’t want to talk about employers or professors right now. Maybe another day. I think recently I’ve heard the most discussion about dating or romantic relationships, and even more specifically: when is the right time and what is the right way to disclose your diagnosis to a significant other or casual partner?

If you were looking for one or two sentences to answer those questions, you’re in the wrong place. I really don’t know if there is a right answer. When and how someone decides to share their diagnosis or any information about their medical identity is personal and situational. For some people, perhaps it does make the most sense to come right out of the gate explaining what they’ve got going on, particularly if it’s something more visible or if it impacts their life in a way that’s more difficult to conceal. For others, it may be more easily concealed, and therefore gives them a bit more discretion in how they choose to share that information about themselves. However, in my absolute honest opinion, if a person forces you to feel like you must disclose something about yourself for them to show compassion and understanding, they are not the person for you. Regardless of whether it is the first date or your five-year anniversary, nobody should make you share information you aren’t comfortable sharing!

The other piece of this puzzle is the fact that you can only control what you share. You can’t control or assume how someone may (or may not) react. If you are with someone who is unfamiliar with the medical world in general, it may be a lot for them to take in if you whip your shirt off and expose your central line, a G-Tube, a J-Tube and an ostomy pouch. To be clear, I’m not saying you shouldn’t do that. You do you. I’m just saying that may merit a different response than if you gradually introduce them to the idea of medical devices, how they work and why you need them to stay healthy.

You want to get real personal? One time during college, I was “with” a guy I had just met and basically did just that of which I described above and upon seeing my central line, he asked me if I was a cyborg. We laughed and life went on and now I have a funny story to tell at parties. But let me reiterate: if they aren’t cool with all of you, they don’t deserve any of you.

There is no step-by-step guide for how to disclose a diagnosis or any sort of medically-related information to a new partner/friend/employer/teacher/etc. And if there was, I certainly wouldn’t be an expert on it. But I think the more we talk about it, the more we can begin to decrease the stigma surrounding it and the issue of disclosure won’t feel like a huge, scary milestone, but rather just something that can be casually mentioned in conversation. I think these conversations are even more difficult given how we as a society view romantic, and more specifically, sexual relationships overall. It’s not something that’s commonly talked about, so when you add yet another element of potential awkwardness, people often shy away from it altogether. But if we don’t talk about it, who will? Maybe one day I’ll do a separate blog post about my relationship with my body and my medical devices.

In terms of relationships though, particularly those of a romantic nature, honesty is the best policy. In my own life, I have become notorious for minimizing my medical needs in school, work, relationships and life in general. When Kyle and I first started dating, I was hospitalized with sepsis shortly thereafter. That means I literally had an infection throughout my bloodstream. I shared details with him via texts and phone calls, since we were still doing the long-distance thing, and tried to play it off like a typical hospital visit. I think sometimes it’s hard to find that balance when deciding what to share with a new romantic partner, as well as your work colleagues and other peers. When you’ve spent so much of your life in a hospital, things that tend to be pretty scary for people outside of the rare disease/chronic illness community, become sort of “normal” to us. So then it becomes difficult to figure out how to share when things actually are kind of scary for us because we’re not used to being the scared and vulnerable ones. Kyle asked if I wanted him there when I was sick, but we weren’t at a point in our relationship where I wanted him to see me at my worst, so I said no. If I’m being honest, sometimes I still feel like I need to be the tough one, even though I know I don’t. We’ve all got room to grow, right?

Another important thing I’ve realized being in a relationship in general (but particularly while dealing with some pretty complex medical shit) is that life is not a Hallmark movie. If you want your partner there during a surgery or while you’re sick in the hospital, tell them. If you aren’t ready to share everything yet, tell them that, too. As much as we wish they were, people are not mind readers. However, the best people will be there when you need them to be. You just have to ask. And perhaps you are thinking, “But I shouldn’t have to ask!” I know I’ve said that. And eventually you may not have to, but until someone learns what your “normal” looks like, you need to be willing to share with them what they can do to support you, on your best and worst days, even if it’s only a little at a time.

The right person will help you discover the best version of yourself. They will understand if you want to stay in for a date night instead of going out. They will not roll their eyes when you pack five bags for an overnight stay somewhere. They will help you lug a cooler of total parenteral nutrition (TPN) from place to place without batting an eye. They will make sure you always have a six-pack of Gatorade with you during the summer. They’ll even remind you to bring your favorite room spray to the hotel because … well they know how you get after drinking iced coffee and eating burgers and hot dogs all day. I can promise you, if you don’t feel like you can be your whole self around a person, they probably aren’t your person.

Lastly, more important than finding someone else who loves you is learning to love yourself. That is not to say you will not find your person if you are still working through some stuff yourself. In fact, they may even be the ones to help you through those tough spots, but we can’t expect someone to walk into our life and fix all of our broken parts. We need to be honest and kind and patient, and be willing to trust someone enough to come on this journey with us.

But we must also recognize when someone is not willing to love every inch of us and realize we are worthy of so much more, regardless of the hardware that comes with us. It was difficult for me, and sometimes it still is, to allow myself to be vulnerable with someone in every sense of the word. But through my vulnerability, I have found strength, trust and joy, and in my opinion, that is what relationships are truly about.

Follow my journey on Maisy From Maine

Original photo by author