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The Hardest Part of Dating With a Rare Disease

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All my life I have always been the hopeless romantic type, never believing I would find that Allie and Noah from “The Notebook” kind of love, but anyone that has ever tried to date with a rare disease knows that it’s an unrealistic hope. As years have passed and my disease has worsened, I’ve come to realize it has become especially difficult to find “the one” in a dating pool that has shrunk to be a swampy puddle. Now let’s add a significant other’s acceptance of chronic pain to the equation and you might as well search for a mystical creature to utter the words “in sickness and in health.”

With the abundance of dating apps out there, it’s not so much the difficulty of getting a date, than it is keeping a person around after you tell them your personal story.

For the majority of my life, I’ve been battling a rare and exhausting disease called erythromelalgia (EM). Simple activities such as walking, sleeping, eating or standing become difficult due to sudden bursts of pain called flare-ups. Some might refer to EM as an “invisible disease.” It is felt rather than seen, so depending on a person’s affected area, you are able to conceal your disability. This makes it almost impossible for outsiders to notice — a task I’ve became a pro at.

Being an adolescent and wanting the acceptance of the opposite sex, a person is socially conditioned early on that you are about appearance not personality. So, I began the practice of hiding my disease during my teenage years. Out of sight, out of mind right? I would wear pants to cover my legs and though extremely painful, sneakers and socks to cover my bright red feet. Now as an adult in my thirties, I still do my best to conceal my illness, in fear that a man won’t give me the chance of love due to a circumstance I have no control over. How in the world does one explain to a future significant other that your feet/legs feel like you are walking on hot coal, so you can’t go on that romantic date they planned?

Back track a few months, after much determination from friends, I eventually signed up on a dating app on my phone. I knew it was cheesy but I kept telling myself that I wouldn’t need to go out and actually do the difficult chore of walking or standing around to meet people. This way, they came to me. And they did. One in particular was attractive and seemed like the whole package. I made the decision to chat with him for a few weeks before we met in person. I was hoping he would get to know my personality before he found out about my disability.

After a nice dinner date, he asked if I wanted to take stroll to an area in downtown that had a spectacular view, but was a few miles away. Some women might find this gesture romantic and jump at the opportunity, but for me, it sent beads of sweat rolling down my spine. Looking down at my cute boots I strategically wore to cover up my EM, I swallowed hard and nodded to say, “Let’s go.” I was anticipating the flare-up that was going to come after walking those “few” miles.  As predicted, it did. I screened my pain as much as I could, but my cover was being blown by my sudden silence and breaks into hot flashes. My feet were on fire and felt like a ton of bricks had collapsed on them. Noticing my heavy breathing, he asked if I was OK. Despite the agony, this wasn’t the time to break the news, so I said yes and kept walking.

Upon arrival to the destination, without a care of who was around or where we were, I ripped off my boots with my socks and embed both feet on the cool pavement. A sense of relief came over me. My date gave me a confused look, in which I replied, “Sorry these shoes were killing me.” Trying to lighten up the awkward mood, I followed it up with “I promise my feet don’t smell.” All while hoping it stayed dark enough for him not to see the pigment of my bright red feet.

After a few minutes, my flare-up finally subsided. I was back to normal but in true EM fashion, that didn’t last very long. My date mentioned that he might surprise me with a trip to my favorite amusement park. Again, to some this was the perfect scenario but for me, anxiety filled my body, paving the road for the next flare-up. I now have the extra burden of explaining that a trip like this needed to be strategically planned. How do I express that he needed to push me around in a wheelchair because I can’t walk or stand for hours, or that the weather needed to be below at least 85 degrees because heat triggers erythromelalgia flare-ups?

Sure some might say, “If they like you enough, they’ll accept you as you are,” but that’s not always the case. I have had my share of expressing to a man that I can’t do certain activities due to my disability and never hearing back from them. Although we have thick skin, being rejected for a shallow reason and without a care for understanding our disease can send our confidence on a downward spiral, leaving us to believe that we deserve less than others.

Almost daily we battle a silent disease. To some we look normal, which in a sense can be a good thing, but without others’ understanding, it can eat you up alive trying to conform to the “norm.” We have our good days and our bad. We love to be active, but some activities need to be altered or absolute all together in order for a good day not to turn bad. Those with chronic pain have the will of a hundred lions. See, those with disabilities like mine, who are searching for their other half, aren’t looking for pity or a caretaker. We aren’t looking for advice on what might help us when we tell you about our disease, because believe me when I say this, although we appreciate it, we’ve probably done it all. We are looking for a person that will love us for us.

Please understand when we tell you about our struggle, our vulnerability is at stake. We don’t tell everyone our history, but when we do, it means you’re special to us. Our pain is like a vicious cycle. We live day-to-day with unpredictability, so we might not be able to do normal activities, but that just makes us appreciate your small gestures even more. We are not here to burden anyone.

Having a disease does not make me any less deserving of human emotion. Following the date, I was angry at myself for not expressing who I really was. What made this little detail any different than how I would answer the “tell me about yourself,” question? Wasn’t this me, after all? I know I’ll eventually find the one who will look past my erythromelalgia and love me for me.

I am not sorry for my disease, but I am sorry for those who bypassed getting to know me and missed out on my awesomeness.

Originally published: August 24, 2016
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