Why You Should Befriend a Person Who Shares Your Same Illness

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Melissa and her friend smiling while sitting on stairs
Melissa and Laura.

When I was diagnosed a year ago with a rare and incredibly painful disease called erythromelalgia (EM), I felt like my world had abruptly come to an end. Not only was I surprised to learn I had a rare disease affecting only 1.3 in 100,000 persons, but it also wiped out any hope I had in a magical 10-day prescription cure. EM makes a person feel like they’re literally burning alive. The skin also becomes painfully red and warm to the touch. It’s not uncommon to see an EM sufferer wearing sandals year-round. Although it can impact any part of an individual’s body, it usually affects my hands and feet the most.

I spent a year fumbling around with my mixed feelings as if I were in my own “push me, pull me” game. I kept going back and forth, trying to accept my newfound disability. It reminded me of how a couple feels when they’re emotionally stuck in a dysfunctional relationship. Instead of ending it, they constantly break up then get back together over and over again. However, with a relationship there is a choice to leave. With a disability, there is no option to leave and no end in sight.

I wanted to revive the cheerful person I had been before this condition invaded my life. I also needed to learn how to cope with my unpredictable symptoms. So, I joined an online EM support group hoping it would help me better deal with my new everyday struggles. A kind, optimistic woman instantly befriended me in the group. Her name was Laura.

Our online friendship helped me in ways I never imagined. Because she had been diagnosed a few years prior to me, she understood my early stages of anxiety, fear, and most of all – my type of pain and emotional suffering. She was able to empathize like no other could unless they had this condition. Our friendship bloomed and whenever either of us needed encouragement to face our challenges ahead, we supported each other. We began talking about good things happening in our lives too.

I told Laura how excited I was when my husband had surprised me with Riverdance tickets for our anniversary. Although I eagerly anticipated the show, I immediately feared the long walk to the stadium. By the time we reached our seats, pain had overwhelmed my body to a point I had to sit down and take some deep breaths. Along with the misery came a flood of sad emotions. Events like concerts, shopping, festivals, and sightseeing weren’t fun anymore because I’m incapable of walking for long periods at a time.

Melissa and Laura showing their red, painful feet
Melissa and Laura.

After the show that evening I realized how deeply I had been struggling with the thought of using a wheelchair… but why? I confided in Laura who had previously ordered her wheelchair and she gave me a new perspective. She said her wheelchair would allow her to enjoy her life more. She’s able to go out with her spouse, friends, go on vacations, and comfortably enjoy seeing more of what the world has to offer with less pain. She keeps her wheelchair handy if she needs it. She was right, and in that moment my anxiety faded away. I had been pretending to the outside world that I had no physical struggles — which served no purpose.

After a year of chatting over the phone and computer, we coordinated dates and my husband and I made the eight-hour drive to Massachusetts to meet her and her spouse, Matt. Because Halloween is my favorite time of year, we decided upon Salem as our destination. It was an ironic location choice considering the many women (thought to be witches) that were actually burned alive in historical years. Although Laura and I weren’t witches, we did have “burning alive” in common.

We had a wonderful time. Halloween vendors filled the streets and we enjoyed every moment the town had to offer. Although our pictures depict us as healthy individuals, there were several moments when we consoled each other over the pain we were feeling. We couldn’t walk far without taking a break. It’s amazing how well we’ve mastered the art of pretending we’re not burning alive. We’ve learned to cooperate with our condition as best we can.

Laura’s optimism helped me to become a better friend to others who may be struggling with our same disease. Moreover, I’ve made some amazing friends along the way that I wouldn’t have met if not for my condition.

Follow this journey on  Burning for Hope

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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.

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Interviewing Erythromelalgia

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Over the past eight months I have been replying to messages of family and friends around the world and basically functioning according to two different time zones.

Answering questions about erythromelalgia (EM) has proven to be hard. How can you explain about a rare disease that even doctors find hard to explain or understand?

So one sleepless night, a conversation haunted me. I had been thinking how little awareness there is about erythromelalgia, which is the main reason it often goes undiagnosed. What if EM was given a voice? The following fictional interview with EM is the result of that long sleepless night.

Reporter: Hello and thank you for doing this interview.

Guest: Thank you for inviting me under the spotlight.

Reporter: Do you mind telling our readers your full name?

Guest: Erythromelalgia, but people call me EM for short.

Reporter: Oh what an interesting name! How old are you EM?

Guest: Well you wouldn’t believe it if I told you, but I’ve been around since the late 1800’s.

Reporter: No way! I would have never guessed! How come you are not so famous already?

Guest: I’m unique I guess. My talent is so rare, not many understand it, not even experts!

Reporter: For those who don’t know about you yet, can you share with us your talent?

Guest (smirks): I was hoping you would ask. I can make people flare.

Reporter: Flare? What’s so special about that?

Guest: Flaring makes people feel like they’re burning alive in their own skin, without even knowing what hit them.

Reporter: Oh! That sounds intense!

Guest: It is very much so. The trick is causing them to flare badly, until they give up everything.

Reporter: Can you be more specific?

Guest: Easy. I start by flaring their limbs until they give up their mobility and sleep, then I let my fire rage all over their body.

Reporter: And why do you do that?

Guest: Because no one has stopped me yet.

Reporter: On whom do your tricks work best?

Guest: Everybody! Flaring affects babies, kids, teens, adults and elderly of both genders.

Reporter: Do you think there are other talents out there that can match yours?

Guest: You will have to ask NORD about that.

Reporter: What’s NORD?

Guest: National Organization for Rare Disorders/Diseases.

Reporter (feeling uncomfortably hot and flaring red): Excuse me, I’m going to have to end this interview short, I don’t feel so well.

Guest (smirks): No problem at all, I have that effect on people.

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Trying to Live Life on the 'Sunny Side' of Chronic Pain

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It’s that moment many people dread – the alarm clock going off in the morning. I reach over and immediately turn it off. I don’t ever hit the snooze button because that would mean I plan to “snooze,” and that’s a joke. I’ve forgotten what snoozing feels like… that peaceful, dreamy state of mind as you feel your body drift off into a sound sleep.

I perpetually fight the urge to call out sick to work more often than I care to admit. It’s mostly because I know once I’m awake, the first thing I’ll have to do is take a shower, blow-dry my hair and get ready. To any average, healthy person this is probably a typical part of their day they look forward to, but for me it’s like stepping inside a blazing fire. “Heat” is not my friend, and it makes my skin painfully bright red.

I chuckle when I think about the fact I live much of my life in the darkness like vampires you’ve seen in movies. Well, I guess that depends on which vampire generation you’d imagine me in. I certainly don’t sparkle in the radiant sunshine like Edward Cullen in Twilight. Nope! I can’t tolerate direct sunlight at all. It makes me feel like I’m literally burning alive into a pile of ashes.

I have erythromelalgia (EM) and although I’m suffering horribly, I refuse to let chronic pain control my life. I also try my best to keep a sense of humor (in case you missed it, it was in the previous paragraph where I tried comparing myself to a sexy vampire unsuccessfully).

I go to work every day because I want my body to know that my willpower is stronger. I am a warrior. I’d rather keep my mind busy with work and off my pain as much as possible. That’s not easy to do on days when I’m feeling like the Human Torch.

It would be too easy for me to forget the shower, comb my hair back into a ponytail and throw on a dismal-colored outfit for work. But what would that be achieving?

I think it would fuel more ammo into the negative feelings over my disease. So, I push through the agony of getting ready daily because I want to feel like an average person, even though I’m not.

I’m 1.3 in 100,000, but that’s OK.

I wear bright, cheerful colors because they exude the happiness of a rainbow when I see my reflection in the mirror. Every little bit of “anything” helps.

I sit at my desk enduring scorching flare-ups throughout the day and it sucks. But life is going to continue with or without me. My chronic illness has a piece of me, but not all of me. I’d rather try to have a positive outlook. So, I’ve rigged my cubicle to accommodate my disease. I have a portable fan (of course, that’s a given) and I keep a pillow on top of my trashcan that fits under my desk. I use it to prop my feet up. Elevation helps relieve my burning feet sometimes. Last resort, I will go into the bathroom and sprinkle cold water on my hands and/or feet, whichever are flaring.

I try to view my disease as “I’m sharing my life with chronic pain,” versus “My life with chronic pain.”

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The Day My Daughter With a Rare Disease Decided to Donate Her Hair

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Lynn with her long hair
Lynn.

At 20 weeks of pregnancy I was scheduled for an anomaly scan, which is a routine detailed ultrasound. The two previous ultrasounds were 90 to 99 percent sure I had a baby boy, only I was secretly dreaming of a baby girl and when the anomaly scan confirmed I had a girl, I was flying with happiness. I still remember very clearly the first thing I did after that appointment: go to the nearest baby shop and buy all the cute baby girl headbands and small stick-on bows that I found. From that day on, I started dreaming of my baby’s hair and how I would enjoy brushing and styling it everyday.

True enough, for eight years, I enjoyed brushing and styling my Lynn’s hair. It made me happy when she’d come home from school to tell me her friends and teachers complimented her on the new hairstyle. I could see her eyes twinkle when she reported, “ Mommy everybody likes my new hairstyle.” It was pure joy for me to take care of my daughter and
anything related to her. I didn’t mind waking up at 5 a.m. to prepare her lunch bag and make special decorations for her food. I made sure her school costume was always clean and ironed and sprayed with a refreshing fragrance. I loved to tend to the small details, like keeping her pencil case clean and refilled, laminating her books and copybooks and customizing her name tags. So, styling her hair was a big deal for me, a pure enjoyment.

Lynn loved her long hair and she always shared new styling ideas with me, but the past few months, I hadn’t been able to style her hair because she had become very sensitive to touch. Her recent diagnosis with erythromelalgia (EM), or “the man on fire disease” has imposed new challenges to her overall lifestyle. Washing and drying her long hair would mean a long episode of burning pain to Lynn, because the temperature change would trigger her bodyto flare. The flares in her scalp made it red and sore, so brushing or tying her hair was very painful, let alone styling it and adding pins, bows, or elastic bands.

Lynn posing with long hair.
Lynn.

On weekends, Lynn loved to sneak into my bed in the morning and have some “ girly talk” like she called it. A few weeks ago, as she lay in my bed, cuddled next to me, I softly caressed her hair. She looked up into my eyes and said, “I miss having you make new hairstyles with my hair mommy, you are so creative.” Choking with tears I replied, “I miss that too baby, and I’m sorry that it hurts so badly,” and I hugged her tightly. At that moment, she jolted upright in bed and said, with a huge smile on her lips and twinkling eyes, “I have an idea!” I asked what her idea was, and she surprised me by saying that she wanted to donate her hair to sick kids who have lost theirs. Honestly, her suggestion took me by surprise, and I wasn’t ready to let go of my baby’s long beautiful hair. I was also afraid she might regret cutting it later on. The past few months she had given up on a lot while we traveled looking for a diagnosis and a treatment. She had already left behind her home, school, teachers and friends, and given up on ballet and piano. There had been too many changes and forceful sacrifices because of her EM. Her activity level was impaired, and so were her sleeping and eating habits. I tried to talk her out of her idea by suggesting she should wait till her hair was longer. I tried convincing her of alternative styling methods that are less painful. All to no avail! She had made up her mind. She said one sentence, and I caved in.

“Mommy, I think it is time another girl enjoys my hair; I’ve enjoyed it long enough. Let’s give hope to others who are in pain like me.”

At the age of eight and a half years, I watched my daughter donate her long beautiful hair to kids with cancer — the hair that I loved to style and brush for all those years and smell every morning and evening. Her words kept playing over and over in my head. Her hair will now
go to another little girl and make her smile despite the pain. The hairdresser and the people waiting at the salon congratulated Lynn for her kind heart. I felt so proud of her for having the early wisdom of wanting to spread hope to others who are also in pain like her. I was so proud that her pain only brought out the best of her.  Lynn was smiling through out the whole process and despite the flare she had at the hairdresser, she refused to stop.

After leaving the hair salon, she proudly said, “It will grow again mommy, it’s just hair.” 

Follow this journey on The Fire Fighter Mom 

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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What It's Like Living With the 'Fire' of Erythromelalgia

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Photos of hands and feet and faces during EM flares
What EM flares look like.

Imagine yourself living during the medieval times and although you’re an innocent person, you’re about to be secured to a wooden post and burned alive while a crowd of people watch. That pretty much describes the impending doom when diagnosed with Erythromelalgia (EM). The only differences are those suffering with EM burn alive on a daily basis and we’re not tied to a stake. With today’s technology it’s hard to believe we’re still somewhat living in the stone ages in understanding EM. The exact underlying cause remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities.

EM causes severe burning pain, noticeable redness (erythema) of the skin, swelling, and increased skin temperature, particularly of the feet. However, the hands, face, ears, and limbs can also be affected. Although both sides of the body are usually affected, it can be limited to only one side. Primary EM may occur randomly for unknown reasons or rarely may be familial. Secondary EM occurs when an underlying condition such as an autoimmune disease, neuropathy or Lyme disease is present, to name a few. Some people burn continuously throughout the day while others have intermittent episodes of ‘flaring.’ The excruciating flares can last from hours to days at a time. Nighttime tends to be worse. Episodes are mostly brought on by warm temperatures, eating spicy food, alcohol consumption, temperature fluctuations, exercising and walking. The pain can be so intense that a patient cannot walk.

The first stage of misery is figuring out your own diagnosis. Most EM patients journey from one doctor to the next for several years before receiving an accurate diagnosis. It’s not uncommon to be misdiagnosed with Raynaud’s disease, Cellulitis or various other conditions. In my case, I obsessively researched my symptoms online for nearly a year before coming across a few EM pictures. I was absolutely terrified.

I didn’t think it was possible I could be “one in 100,000.”

I knew I was a unique person but seriously?  C’mon. That had been the one time I’d rather be just like everybody else in the world. Because the disease is rare, most doctors have never seen or heard of it. I brought in an EM brochure and cell phone pictures to show my local neurologist. He had only seen one previous case in his 30-year career. Apparently I lucked out in that he had at least seen it before. I decided to make the two-hour excursion to Johns Hopkins for further testing. After repeated visits with various specialists, blood work, urine samples, and gene mutation testing, I am still in the same position today — no answers.

The endless voyage has just begun once a patient receives their official diagnosis. Several doctors turn patients away because they don’t feel comfortable treating a disease they’ve never heard of. Some physicians aren’t willing to work with patients when it comes to experimenting with various medications until some form of relief is found. Unfortunately, there’s no understanding on which type of doctor a patient should see – neurologist, dermatologist, hematologist, rheumatologist, podiatrist, geneticist, internal medicine, cardiologist, pain management or a primary care physician. The pain feels and looks like a scorching fire inside the limbs. Desperation leads a patient to erratic thoughts of flying across the county to see any renowned doctor who could possibly provide some relief. I’d jump up and down on one leg in a blazing desert while eating live crickets if a doctor said it would cure me. It reminds of that 1980’s USA commercial with their infamous motto, “What would you do for a Klondike bar?” For us, the saying would be, “What would you do for an EM cure?” I’m sure our applicants could get pretty creative. I don’t want to accept a portable fan and foot elevation as my only means of continued existence the rest of my life.

The pain is often unbearable and the suicide rate is high. When I was first diagnosed, I made the mistake of going online and researching Erythromelalgia stories. I read obituaries of victims who could no longer deal with their excruciating pain. I also came across EM clinical trials where some patients had died by suicide before the trial concluded. I read the phrase “wheelchair bound” in several articles.  I felt incredibly isolated, afraid, and far away from the ordinary world.

No one medication, therapeutic method, or procedure has been consistently effective for EM. It’s well noted that ice water immersions, although cooling, have a negative impact on the disease itself and can cause further complications such as ulcers. Like lab rats, we’re forced into experimenting with various medications, vitamins and herbal remedies due to our poor quality of life. The side effects are a whole different story. Chances are high a patient has wasted money on a wide range of creams that provided little to no relief. A small percentage of people have benefited from formulated compound creams, but none of them have worked for me. To me, that’s camouflaging the ‘real’ underlying problem, whatever that may be. Pain patches are another source of mild pain relief but it does little for quality of life. The Erythromelalgia Association (TEA) founding member, Dr. Jay S. Cohen, M.D., personally suffered with the disease and offered several medical and natural treatment options to explore. Thanks to him, I take several supplements that assist in my daily survival. Dr. Cohen passed away on December 6, 2015. His obituary did not state his cause of death. His passing was a major loss to the medical community and particularly sad for EM sufferers.

EM does not discriminate by age, nationality, or gender. It’s a tough disease for adults to tolerate let alone children. Some EM children have never known a life without pain. We take for granted how simple life should be for youngsters – sleep, eat, learn, play, love. Imagine if every day were an agonizing struggle for your child? Many adolescents endure painful flares during school hours, requiring their parents to pick them up. Most of them are not able to participate in physical education class with their friends. The intermittent flaring makes it challenging to maintain good attendance. It often times forces parents to make the difficult decision of having their child home schooled. For all these reasons, engaging socially can have its own set of problems for many youths.

The picture featured below touched my heart on many different levels. Not only can you see this little boy’s pain in his lower limbs, but the background clearly shows an elderly couple’s empathetic stares. No child deserves to feel that much agony during a simple trip to Walmart to see the Easter bunny.

boy with EM standing next to easter bunny in grocery store
A boy with EM posing with the Easter Bunny.

As for me, I have EM in both hands and feet and sometimes my ears. I suffer with chronic pain on a daily basis. As a result, I’ve become a fraction of the person I used to be. I once had been an extroverted, funny person who brightened a room with my contagious laughter. Too much excitement now can cause a few hours of pain so I try not to overexcite my nerve cells. My days are spent enduring sporadic flares, not knowing if one episode will feel worse than the previous. Sunlight used to be my biggest enemy, but now I flare anytime, any place for no specific reason. Cooking, cleaning and holding my cell phone causes my hands to flare often. Walking for longer than 30 minutes can cause my feet to flare depending on the weather. The swollen, fiery throbbing is indescribable. I breathe through the pain, then pray it passes soonest. No specific drug has relieved my symptoms to date.

It would be a great morale booster to go one full day without pain.  But then I take a shower and typically the fire begins. Possibly the fire waits until I turn on my blow dryer or curling iron. Maybe I luck out and the fire holds off until a temperature change is triggered. Eventually, the heat is on regardless of what I do. The fire walks with me wherever I go. I’m reminded daily of my constraints when I walk in my closet to get dressed. I have lots of clothes and shoes I haven’t worn since my EM diagnosis. A bulky sweater and flip flops doesn’t exactly go well together. Besides, heavy clothing can cause overheating and that’s a nightmare. One side of me says, “Get rid of those clothes and shoes. You’ll never be able to wear them again.” Then the hopeful side of me says, “By giving away those items you’re surrendering ALL hope for relief or a cure.”

It’s difficult for family and friends to understand this disease. Although they love us unconditionally and understand we’re suffering, who could comprehend the feeling of burning alive every day? It’s hard for others to grasp this type of pain, depression, and lonesomeness. Many of us mask our sorrows. I sometimes cry in the shower or when I’m driving in my car. I feel like I’m watching my life wither away. EM doesn’t just affect the patient, it impacts their entire family. Our condition limits any events our loved ones would ever want to plan with us. Reality strikes knowing there won’t be anymore hot, sunny outdoor activities to enjoy. A summer gathering now sends signals of great sadness because we can’t comfortably be a part of it. Will there ever be a time we can sit in the sunshine feeling the rays of warmth on our skin without pain? Will a day arrive when we can go for long walks, hiking or bicycling again? Those memories are quickly fading and being replaced with tears of loneliness. It’s unfair for families to hold back living their lives so we pretend to maintain a smile while observing from afar. We’d love to physically do all the things they can but that’s impossible right now. Many of us are on disability while others struggle to get approved for it. I am still able to work. I get up daily and head to the office, finish my shift, go home, sit on the couch, eat, sleep, then repeat the next day. I have a fan on my desk (of course). I’m surrounded by the same walls day in, day out. The routine makes me feel like I’m not living anymore.  I’m merely surviving.  The youthful, energetic person I once was is fading away.

I feel a sense of comfort knowing others are fighting this ‘fire’ with me. I’m not relieved they’re suffering but I’m thankful I’m not alone. Our EM online support group of 1,000 members is the most amazing community I have ever been a part of. Although it’s mostly comprised of women, many men and children suffer with EM. When an EM warrior is down we chime in to lift their spirits, letting them know we’re all in this together. Our warriors reside all over the world – USA wide, Canada, Norway, England, Scotland, Argentina, New Zealand, Italy, Sweden and France, just to name a few.

Whenever I feel down I’m reminded of reasons to be grateful. I dined in a restaurant one evening when a teenage amputee walked past me. She was smiling and I thought to myself, “Wow, she is an inspiration.” During another dining out, I watched a group of hearing impaired ladies sign language with each other throughout the evening. On a different occasion I stood at a bus stop, feeling pained, when I saw a mother pushing her severely mentally challenged adult-child by in a wheelchair. The mother had been smiling and laughing with her child, and I felt joy in my heart.

I came to realize we have plenty of reasons to smile. We’re blessed to have our limbs (regardless of their malfunctions), mental well-being, vision, sense of taste and smell, and our ability to hear. The goal is finding things we can do. Freedom is in the imagination. I enjoy writing when my hands aren’t flaring. Going to the movies is enjoyable. It’s dark and cool inside so it makes me feel like an average, everyday human being. The best things in life are free: hugs, kisses, love, smiles, family, laughter, friends, good memories and sleep.  Well, scratch sleep off the list. Most of us aren’t getting any unless we’re medicated.

I find my strength in God, my spouse, family and our Erythromelalgia online support group. I believe a day will come when there is no more suffering. For now, I just take it one day at a time. I’m optimistic for a cure. In the meantime, my hope is for a better understanding of EM and treatment options for those suffering with this dreadful disease.

Children with EM, hands and faces red from flares
Children with EM.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Follow this journey on: Melissa Ann Site

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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