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The Challenges of Telling Someone You're Dating About Your Chronic Illness

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Let’s face it, dating is hard no matter who you are, but add a chronic illness to the mix and it can be nearly impossible. My love life is nearly non-existent, and all my attempts at dating have been a mess, and I know Ehlers-Danlos syndrome (and all my accompanying conditions) is partly to blame for this. First of all, I never know when to tell someone I have a chronic illness, let alone how to tell them. I want to come off as casual so I don’t scare people away, but this often fails.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I live a very sheltered life. I cannot work, so I am stuck living at home with my mother at the age of 26. I spend my days doing countless menial projects to fill the massive amounts of free time I have. Due to Ehlers-Danlos, I am in pain every single day and I often have to cancel plans last minute because I don’t feel well enough to go out. I can never be that spontaneous fun girl because I have to literally prepare for every potential threat to my body by wearing braces, taking pain medicine or just mentally preparing myself to be outside of my home. This is not conducive to dating; I cannot meet anyone because I am relegated to what feels like house arrest. This brings me to the dreaded online dating.

Most people I have encountered through dating apps are looking for a casual fling with someone who, again, let’s face it, does not have any of the baggage that can come with having a chronic illness. I have come to learn that it is best to tell people right away – that way I won’t be as hurt if they aren’t interested because we haven’t had the chance to form a connection of any sort. When I tell someone about Ehlers-Danlos syndrome, I am forced to overemphasize the fact that just because I have an illness, it does not define who I am as a person. I desperately try to make people understand this and then worry about how I’m coming across.

I am not looking for a fling; my life is not conducive to a breezy relationship. I am looking for a long-term relationship with someone who understands that sometimes I can’t go out and I often have to adapt the way I do things because of my chronic illness, but I also want them to not focus on my illness. I want to have a normal relationship, one where we focus on who each other is rather than the unfortunate circumstances we may find ourselves in. I often wish there was a dating site dedicated to people with chronic illness, people who know what it is like to be in pain literally every day. It would not only make it easier to talk about our chronic illness, it would be one less barrier to finding someone who sees the person rather than the illness.

I do want to mention that I have had a total of three boyfriends in my life, and each of these guys has been pretty cool and casual about my chronic illness. None of these guys were bad in any way, but none of them really fit who I am as a person, so I ended up having to end each of these relationships. I did not come to the decision to do so lightly. To be frank, I
am frightened I made the wrong choice and I will never find another guy who is OK with my chronic illness, that I am just waiting for someone who does not exist. I have had to hold my head high and tell myself I deserve more than settling for someone just because they accept my chronic illness.

I must hold this conviction in my heart every single day as I continue on the journey to meeting someone I truly connect with. I must remember that sometimes it is I who am focusing too much on the realities of my chronic illness and I should lead with my personality more. Sometimes I want to give up and accept I will always be alone, but I know my life is missing something, so I must walk this rough path until I find the person I am looking for and who is looking for an intelligent, weird, unapologetically nerdy girl like me.

Thinkstock photo via EpicStockMedia.

Originally published: October 19, 2017
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