To the Man Who Made Me Feel Beautiful Despite My Insecurities About My Rare Disease


It was about a year ago that I wrote my first article for The Mighty called “The Hardest Part of Dating With a Rare Disease.” The piece expressed my thoughts on the struggles of finding a significant other when you have a rare disease. Little did I know, just 12 months later, I would come across someone who changed my views on romance, compassion and how I now see myself.

For the last 25+ years, I have been struggling with a rare and invisible disease called erythromelalgia (EM). The disease makes my life a never-ending battle with chronic pain. No matter what my enthusiasm level, EM tends to have the power over my body to pick and choose when it’s going to let me feel normal or instead, rage in pain. My confidence level tends to reach its lowest peak and I begin to lose sight of who I am – hitting rock bottom. I have never been able to grasp the concept of how my own body can deceive me in such a destructive manner.

Thankfully rock bottom was an unusual place for me to be. Despite having the debilitating disease, I have always tried to be that optimistic, fun and confident woman. In fact, I was usually the one in the group who would joke about how rare I was because of my disease. But what many did not know is that although I was confident in who I was inside, the insecurities of my exterior self always crept in, prohibiting me from feeling beautiful, especially when it came to attracting the opposite sex.

 

In the last couple years, as my disease started to develop more symptoms, making it harder to conceal, I couldn’t help but fall into a dark place. With the rise of social media and the seeming lack of interest in a individual’s personality, I began to loathe who I was. I didn’t think there was any point in putting in work when my personality was just going to be overlooked.

I became bitter and lost faith in all I had built, just because I had a few boys (yes, boys, not men) tell me they wanted a girl they could flaunt, or my personal favorite, “How am going to explain to my family that you have this disease without them freaking out?” It was disheartening. I resented my body for something I had no control over.

Those closest to me assured me I was beautiful and that someone who loved and cherished me wasn’t going to care about my disease. But as much as I wanted to believe them, the dark place I was in didn’t allow me to. All I kept reflecting on was, “Sure, let me tell him how I need wheelchair assistance during some outings or how I’m self-conscious about my lower half, so being intimate might be a bit awkward. And that I take a dozen medications daily and my flare-ups can put toddlers’ tantrums to shame. Or how my doctor appointments might exceed our date nights. Let’s see if he’ll disregard my EM then.”

As much as I appreciated their “pick-me-ups,” I knew it wasn’t reality. Yes, of course it’s incredibly shallow for men/people to judge my situation and I shouldn’t care, but based on the times we live in, I need to be realistic. Media tells us looks are everything, so I thought my outgoing personality meant nothing if all a person was looking for was looks. Why have to deal with my “defective body” when you can get someone who’s nearly perfect – whatever that is. But being the hopeless romantic I am, I couldn’t shake the feeling of wanting that “you’re beautiful to me no matter what” kind of romance. And I finally got it. I’m happy to say, despite taking 31 years, I finally got that. This summer, a man named Robert (name is changed) forever reshaped how my life is lived.

I don’t think I’ll ever be able to thank Robert enough for giving me back my confidence that was buried deep inside. He helped me gain back what was derailed because of the lack of love from those who decided to dismiss me.

To begin, Robert and I met through a mutual friend. In due time, he eventually asked to take me out. My first instinct was to say no. I didn’t want to go. I knew what the end result was going to be: me explaining my disease and him running the other way. But with much perseverance, I agreed to go out with him and soon fell head over heels. And honestly, it scared the hell out of me. Not because of the heartbreak that might follow, but because I would eventually have to tell him the truth about my erythromelalgia. A topic I hated talking about. If I didn’t tell him the truth, I would be lying.

After a few outings, I couldn’t hide it any longer. There were so many times I would make Robert sit outside a bar during a freezing winter night “just because.” Little did he know, the cold air was cooling the burning sensation of my EM. I had to be vulnerable.

After practicing my speech in my head a dozen times, I decided to pull the trigger. In the middle of our conversation about our weekend plans, I blurted out, “I think we need to talk.” Not exactly the subtle way of doing it, but it didn’t matter at that point. With worry in his eyes, he asked what it was I wanted to talk about. Holding back tears and the urge to run out of the room, I carefully explained my situation.

Once all was said, I realized I was looking at the ground as I spoke to him about my EM. I felt shame wash over me. I was too embarrassed to look Robert in the eye and tell him about something I had little or no control over. Holding my breath, I finally looked up to see a blank reaction on his face. There was a moment of silence that felt like an eternity. When he finally spoke, he said, “And? This is you, Mary. Thank you for telling me, but this doesn’t change you being in my life.” Although his statement was comforting, all I could think was, “If only he knew what he was getting himself into.”

As months went by and my birthday approached, Robert suggested going to Las Vegas as a weekend getaway. If I didn’t have a debilitating disease, this idea would be fantastic. Who wouldn’t want to take their first trip with someone they liked? Unfortunately for me, the thought of even traveling with someone who hasn’t seen the 100 percent raw Mary made me anxious, which led to more painful flare-ups.

There were going to be so many factors and limitations I had to not only consider for myself, but also for my travel companion. How was I going to explain that the Las Vegas desert heat wasn’t exactly in
erythromelalgia’s best interest because it would trigger flare-ups, or how I couldn’t go strolling down the strip hand in hand because I could barely walk a block without pain, and there would be the hectic nightlife I can barely endure? One of my biggest concerns was how I was going to let him see my scars, swelling and discolored legs. After 25+ years, no significant other has seen my EM in action. Was I ready for this?

With a body and pocket full of pain medication, a few weeks later I reluctantly boarded the plane to Las Vegas. It’s undeniable that my erythromelalgia flare-ups were in full force that weekend, but my fears subsided with the help of Robert, who firsthand made this the best trip I have ever taken.

Robert made me feel at ease. He never asked me to go past my limits. The moment I was in pain, he knew the right thing to say or do without even realizing it. He did his best to avoid putting me in any predicaments that would cause me any further pain. When there was no choice but to walk outside in the heat, he hailed a cab for what was barely a five-minute ride. I recall a night where I woke up with him bundled in blankets without complaint, all because he knew I needed the room to be colder than the Antarctic in order to soothe the burning sensation in my feet and legs. He did this all without making me feel like a burden. Which for me is all I want as a person battling chronic pain. I could finally be myself. And I was.

The weekend was going perfectly. My fears of not being accepted were starting to diminish, but then he asked a question/comment that made my heart skyrocket out of my chest: “Want to go to the pool? Let’s go babe. The water will be cool, so you’ll be OK.” I thought he had forgotten that giant tub of water outside our window. If I agreed, he would see all of my erythromelalgia. It would no longer be a narrative I would give him. From the discoloring to the varicose veins to the wound scars and the swelling, it would all be revealed. As nervous as I was, I knew I had to do this for not only myself (and Robert), but for all those fighting the disease.

Agreeing to go, I asked him to go downstairs and grab a spot at the pool while I got ready. This was my way of stalling just a bit longer. After some time, I gathered the courage to put on the bathing suit I brought just in case. Standing in front of our room’s full-length mirror, I remember examining each part of myself and thinking, “Man, my legs and feet are so ugly. He’s definitely going to regret taking this trip after he sees me now.”

As I stood in front of the mirror for what felt like a lifetime, racking my brain for a way out, my phone lit up with a text message from Robert, asking where I was and telling me he was waiting at the poolside bar for me. I knew this was something I could no longer avoid, especially with someone whom I cared deeply about. He had already shown me he was looking past the disease. So I walked out of my hotel room, knowing this was either going to make or break us.

Approaching him, I felt the crowd’s eyes on me – or perhaps that was just in my head. My insecurities took over and I just wanted to crawl into a ball and not be visible. With hesitation, I took off my cover-up, my EM now fully visible, and settled next to him. Assuming he saw the look of fear in my eyes, he took my hand, looked me up and down and told me how beautiful I looked. Little did he know, if it wasn’t for the bartender taking my drink order, I was milliseconds away from bursting into tears of joy. His actions were so little, but his empathy meant the world to me.

With some chatting (and maybe some alcohol), I felt comfortable enough to express my insecurities about my disease. I mentioned that although I knew I was an awesome catch, I wasn’t sure why he was still sitting next to a girl with EM, when those tanned, leggy women across the pool might be better arm candy for a good looking guy like him. With confusion in his eyes, similar to the look he first gave me when I initially revealed my EM, he said something to me that has changed my entire life.

Making it known that I was his girl, he wrapped his hand around my waist, planted a kiss on my forehead and said, “Please stop. This is you. If you had not gone through everything and earned and fought for the scars and whatever else you’re worried about, then you wouldn’t be the perfect girl I’m sitting next to. This disease sucks, but it has shaped you and I wouldn’t have you any other way. ”

What he said may or may not have been the truth. Just something he said to lessen my anxiousness. But it didn’t matter because although it was such a simple statement, these are now words I replay in my head when I do have my moments of doubt. He may not even remember saying these words but I do. Verbatim.

They say people come into your life for a reason and it wasn’t until Robert that I realized this saying wasn’t just something you “pinned” on your Pinterest board. It’s a fact.

I’m sad to say, for personal reasons, Robert and I are no longer in contact, but that’s OK. This does not distort the fact that he changed me… for the better! And I will be forever be grateful. He did not shove advice down my throat on how to ease the pain. He absorbed my concerns and did his best to deliver. That weekend, he showed me that despite being different and having to make a few adjustments in life, I do deserve love and affection. He opened my eyes to a world I didn’t think could be possible.

To those battling a rare disease who do not feel beautiful or deserving of love/friendship, I am here to tell you that you are! If you currently don’t have someone like Robert in your life, then I’ll be that person. Despite not knowing each other, I know you are beautiful inside and out. No matter who you are.

I know it’s easy for me to say since each of us have our own battle, but I have been where you are. And I’ve fought my way back. You will find those who accept you. This isn’t just a cliché saying. There are people out there just like Robert, who are ready to accept you. Flare-ups and all.

Of course I still have my days where I stand in front of the mirror, as I did in Vegas, and don’t feel worthy enough, due to the trauma my body has endured from erythromelalgia. But I always try and remind myself that these scars are a huge part of who I am – and they always will be. Having a rare disease is just that. Rare. We are different and there is nothing wrong with that. In fact, that’s a plus!

As for Robert, although I know he may never read this… Thank you. Thank you from the bottom of my heart. Your gestures may have been small, but trust me when I say they did not go unnoticed. You made me laugh, smile and feel beautiful again. You were my angel in disguise and my personal army.

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Thinkstock photo via nautiluz56.


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