Love or caretaker

I truly believe that there is someone out there for everyone! Love is complicated for most people and the 21st century way of online dating makes it even more intricate. I’ve been very interested in this topic especially with my past experiences with relationships. I asked my fellow Rare Warriors about their experiences around this and a common response was that a partner may not always be ready to be a caretaker too. For me it’s not like I can hide my disease until it seems like the right opportunity to bring it up. I also feel that it’s my responsibility to fully explain what they may be getting themselves involved in. 

When a person has a rare condition it often doesn’t affect them, but rather everyone around them. So the partner of someone with a Rare Disease or disability needs to understand their condition and they need to understand that it is not like any other relationship and it may involve assisting their partner in day-to-day tasks like hygiene, dressing, shopping, and even working.

We live in a world where a large amount of people find their significant other via online dating. In 2017, US sociologist Michael Rosenfeld couples are more likely to meet a romantic partner online than through personal contacts and connections. I struggle to put myself out there, romantically speaking. To give my love life a boost I joined online dating a couple of years ago, and to sum up my experience I’ll just say it wasn’t exactly what I was expecting. Having a visible physical disability means you live a life where you are constantly seen and appraised because of what your body looks like. You are not normal, or average let alone regarded as beautiful or attractive. Even if you are deemed attractive in some way you are frequently told “You’re so pretty, it’s such a shame you have a disability.”

Online dating can bypass those first encounters by making things clear from the start. For many disabled people, it can be exhausting to always have to explain yourself and your disease/ disability so it helps if dating websites offer them the chance to say that they have a disability or ask other people whether they are willing to meet disabled people. I’ve certainly found that being upfront is less embarrassing than revealing this later on. My first experiences of online dating, though, were disheartening. I am so used to being in a wheelchair that I left it out of my bio by accident. I just chose pictures that I liked without realizing that they didn’t fully show my wheelchair. Someone told me that I was leading people on by not disclosing my disability. On another occasion somebody told me that my disease was a lot for him to handle and that I had unrealistic expectations when looking for a relationship.

It was tough to understand why people were so cruel. It’s damaging to a person’s confidence to be told (either explicitly or through actions) that they don’t deserve love like other people. I’ve dealt with feeling like a burden for many years and this just brought up those same devastating feelings. I came to understand that it is a lot to digest and to handle – I know because I do it every day, but I know that one day I’ll meet someone who won’t view myself and my condition as ‘too much’.

A fellow Rare Diseases Warrior was in a committed relationship for eight years before she was diagnosed. Her partner at the time couldn’t handle it and they broke up. They stress of having to go through everything with her and the prospect of not being able to have children together pushed him away. Having a rare condition is life changing. It is bound to push people away, but it is also bound to bring you and show you the people who will be at your side through all the hospital visits, the meds, the physical discomfort, and the emotions that come with it all. That is the reality for another Rare Diseases warrior.

For a long time I truly believed that I could never have a serious long-term relationship with anybody. I could never have a family. But I’ve had instances in the last few years to meet a lot of new people from all over the world at different conventions and learn about how they developed relationships and made it work. It’s not conventional. It might not look exactly how you thought a normal relationship might look. It’s not a fairy tale. But I’ve been convinced that people can make it work…when it’s the right person and both people are invested in the relationship and each other. It’s difficult and traumatic at times but I’ve been given hope in new ways.

You’re just as deserving of love as anybody else-your illness doesn’t make you less. And the right person will understand and see that. Keep an open mind and faith and an open heart and allow other people the opportunity to love you for the amazing human you are. I think we’ve all learned along the way we’re capable of doing things we never thought possible.. Why not apply it to our happiness too? And I know it’s easier because we’re so used to things working against us but it’s so important to hold onto hope for the good things too however, they might appear. I can honestly now say that it never happens when or how you expect it to but your love story is out there.


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