Tiffany Early

@tiffany-early | contributor
Tiffany Early is a former middle school teacher who lives in Campbellsville, Kentucky, with her husband, Joe, and her dog, Zoey. Early suffers from Ehlers-Danlos syndrome as well as a type of dysautonomia called postural orthostatic tachycardia syndrome. Tiffany advocates for the disabled and chronic illness community through her personal blog www.crazychroniclife.wordpress.com and through an online support group she administrates. She strives to make the best and laugh at the challenges of her chronic illness life. She recently co-authored “Crazy, Chronic Life- A Handbook for Living with Chronic Illness” now available on Amazon.
Tiffany Early

When Your Patient Is Upset With Negative Test Results

Years ago, before my own chronic illness symptoms became as obvious, I accompanied a family member for a medical test. While I was waiting for my family member’s discharge, I started chatting to a nurse. She told me a story about a patient who had come in earlier in the week with vague symptoms. The doctor had ordered an upper endoscopy which came back showing no obvious problems. The nurse laughed sardonically as she told me how the patient burst into tears of frustration at the report. The nurse couldn’t fathom how a person could feel anything besides relief at getting a good report – and seemed convinced the patient wanted to be sick. Even at that point in my life, when I had far less experience with being sick, this conversation grated on my nerves. I imagined the patient coming in, knowing something was wrong with his or her body, desperate for answers. I could understand the patient’s frustration in not getting the answers needed. The nurse, on the other hand, couldn’t understand why the patient was so upset. Years later, now that I’ve battled my own set of vague and sometimes transient symptoms, I can feel that patient’s frustration so deeply. I’ve recently had an onset of neurological symptoms. My legs tingle and sometimes they just don’t work when I tell them to. My neurologist noted hyper reflexes on one side but diminished reflexes on the other. My bladder is a jerk. I’m basically a slow, walking neurological mess. And? There’s currently no obvious cause for my problems. I’ve been through this before. It took years to find out I had Ehlers-Danlos syndrome (EDS). I know that eventually I will find the right doctor who will order the right test to get me the right diagnosis. However, the truth is, I’ve fought this battle so many times that I’m growing weary of the fight. I catch myself cringing when my phone rings (and finding excuses not to answer), because it will be another doctor’s office, another appointment, another test. More needles. More side effects. More bills. So, as a person who has fought the fight for diagnosis for years, and will likely continue to fight for answers for the rest of my life, I want to make something exceedingly clear. It is not wrong or selfish to want answers. Just because someone wants to know the name of the illness plaguing them does not mean that person wants to be sick. They’re already sick and want answers. If you’re still not convinced, think of it like this. Let’s imagine you’re standing around doing nothing and completely out of no where someone punches you in the face. Bam. You see stars. Your nose is bleeding. Holy moly, your tooth is loose. The assailant had quite an arm. By the time you come to your senses, the person who punched you is gone. You look around and have no clue who hit you. You cannot put a face or a name with what caused your pain. Are you selfish for wanting answers? No. Does searching for the person who punched you mean that you wanted to be punched? Of course not. No one would think you were strange or out of line for if you sought out multiple sources to find out how you were injured. Seeking diagnosis is very much the same. You’re suddenly sick, and you don’t know why. You want a name, a cause, something to help you understand what is happening. That isn’t wrong. It’s human nature to seek a cause when an effect has occurred. Friends who  are searching for a diagnosis, I understand your struggle, and I hope only the best for you. Friends who have navigated this course successfully, I’m proud of you for fighting through this. Friends who are trying to understand why any of this matters, I realize that battles we haven’t fought ourselves are hard to understand, and I appreciate your kindness regardless. Please be patient with us – I assure you, we’re all fighting to be patient as we seek answers. Peace, love, and health always. Getty Image by SIphotography

Tiffany Early

Why Telling Me I 'Don't Look Sick' Is a Double-Edged Sword

Every person living with a seemingly invisible illness has lived this scenario. Maybe you’re speaking to a distant family member when it happens. Perhaps you run into a former classmate or friend from work. It could be the sweet lady who sits in front of you in church. Regardless, we’ve all been in those situations where someone says, “You don’t look sick.” It’s a double-edged sword of sorts. On the one hand, this person thinks they’re paying you a compliment. On the other, it only adds to the invalidation we often feel. So, let me make it clear to all those who aren’t living with chronic illness. I think I can safely speak on behalf of all those with invisible illnesses when I say – please, for the love of all that is good and kind and understanding in this world, stop saying we don’t look sick. It just isn’t conveying the nicety that you’re trying to insinuate. For instance, if I “look healthy,” there’s been some serious effort that has gone into that façade. I begin preparing to go into public hours before I go. I know there will be people who try to diagnose my current situation based on how I look that day. I save myself effort and aggravation if I try to look like everyone else. This has nothing to do with make up or wardrobe choice – it has everything to do with waking up in time for my medicine to start working before I go in public. It is about me achieving a manageable blood pressure and often using enough heat or ice to make my joints feel functional. Let me try to explain. I look mostly healthy. Don’t get me wrong – I’m exceedingly aware of all the ways illness keeps me from measuring up to society’s standard of health. However, I look like every other 30-something for the most part. This means when I see doctors I often feel like I don’t meet the bar for what is “sick enough” for them. I typically feel that my smile, laugh or even pleasant disposition inhibits me from getting the care I need. Quality of life is not easily quantified, so I often feel like it is being determined at face value rather than by my actual experience. It’s frustrating. So, when you tell me I “don’t look sick,” you’re listing another problem that keeps me from receiving care- rather than giving me a compliment. I completely understand that isn’t your goal; however, I would be lying if I pretended that I perceive that phrase as some sort of compliment. If I dig into that phrase a little deeper, I’m able to understand why it strikes me as hurtful so quickly. When we say that someone does not look sick, we are essentially telling that person he or she has no obvious disability. This means as my illness progresses, and I inevitably begin using a walker or wheelchair, I will start meeting society’s standard of looking sick. I won’t necessarily be any sicker than I am right now. However, as my mobility changes, I will meet the definition others expect me to fit to be “sick enough.” Please, understand that I am not one to nitpick over semantics. If you say something to me with the best of intentions, I will do my best to perceive it as you intended. I am not trying to make anyone hyper-aware of their language. However, in this world where I believe all decent people are called to learn how to constantly be better and to make their language as inoffensive as possible, I want to challenge you to say something different. In all reality, it’s not necessary to comment on how anyone looks anyway. Try asking someone how things are going – and genuinely wait for a response. Maybe tell someone that you are glad to see them – rather than invalidating their illness, you are letting that person know you value your time with them. I feel like all of us are above commenting on someone’s physical appearance. Oh yeah, and if you make a mistake and accidentally tell someone they “don’t look sick,” no worries. All you must do is add some empathy. Follow up with, “But I understand that you really don’t feel well.” See? That’s all it takes. I promise – I will always appreciate your empathy and understanding. We want to hear your story. Become a Mighty contributor here . Getty image by dolgachov

Tiffany Early

I'm Blooming Where I'm Planted With My Chronic Illness

In the very beginning of my chronic illness symptom onset, I felt more hopeless than I had every felt before. I couldn’t imagine how life would ever resemble “normal.” I mourned the friends who pulled away, and I pushed those who remained as far away as possible. I was scared and miserable. Yet, somewhere amid all that despair, there was an inkling of encouragement. A mantra of sorts began to play within my thoughts, “I have to bloom where I’m planted.” When that phrase still felt empty and pointless, I still said it. I looked at my days and asked, “Am I blooming yet?” When you go from being a bride and a teacher, a young person just beginning to see her life take shape, and suddenly you’re sick, no longer able to work, and feel like the least attractive human on earth – you lose sight of yourself. For many years, I defined myself by my career, and suddenly, it was gone. I was newly married, just beginning to think of myself as a wife, and suddenly every bodily function was on the fritz. It was far from my finest moment. However, I had my mantra. I had the deep desire in my heart to bloom, even though planted in a less than desirable place. So, I tried. I look back today and realize that physically life is not any easier than it was at that time. In fact, my disorders have progressed in ways that both frighten and frustrate me. But, I no longer feel like I’m a person who should be pitied. I’m not ashamed of who I am – or what illness has made me. Looking back, I know that there wasn’t a check list or a blog post that answered all my questions. I know that this blog won’t answer all the questions for someone newly diagnosed. However, I also believe there are changes in thinking and positive steps that I made that helped me reach a better place emotionally. Please, don’t think I’m saying a positive attitude will cure your disorder, it probably won’t. But, there are a few things that have made life less painful for me, and I’ll share them with you. 1. Don’t chase miracle cures. I get it. If I had scientific evidence that eating MoonPies under a pine tree at midnight would help my condition, I would throw myself a MoonPie party under the trees tonight. But… that is ridiculous, so I probably won’t indulge in that particular “treatment” any time soon. Please, if you find an oil, a smoothie, a supplement, or a moon rock that helps alleviate your symptoms, use it to the fullest extent of its usefulness. But, keep in mind that products that are aimed at the chronically ill are often not all that helpful. I Googled, purchased, and lamented the ineffectiveness of so many herbs, supplements, magic drinks, and powders that it’s amazing I still had the money to go see an actual doctor. I’m not saying that there couldn’t possibly be a non-medical treatment that helps you, but I am saying that I went through a lot of disappointment trying to find the magic cure for me. 2. Don’t try to be strong or inspiring. The people who inspire me the most in life are those who have truly gone through hard times and remained transparent about the struggle. I tried to have a positive outlook and smile through the pain, and it made me feel like a fraud. Instead, I’ve learned to be painfully honest about the days that blow like the wind. I’ve also learned that I can be honest about pain and struggles without being unkind or overly unpleasant. When I tried to be a superhero that never complained and always smiled, I was living a lie. It was hard on me, and it was especially hard on those closest to me who had to handle all of the “real” me when I was at my worst. By opening up through blogging and a social media platform about the reality of living with illness, I gave myself space to be true. What I learned is that most people aren’t looking for a superhero sick person. Most are happy with honesty – and maybe a few laughs along the way. 3. Don’t be afraid to accept a new normal. At the onset of my most severe symptoms, I was devastated at the idea of losing the life I had built for myself. I desperately clung to my job, my independence, my mobility, and even the people in my life who were pulling away. I was so afraid that turning loose of my life as I knew it was the end of me. What I’ve learned is that life is a series of adapting to new normal. Yes, the new normal come more quickly when illness is factored into the equation. However, new normals aren’t always bad. I will always miss the old me, but, if I’m being honest, I’m sort of proud of how the current me is coming together. Friends, it’s no secret that being sick is hard work. None of us chose this life. Ultimately, you can’t change where life has chosen to plant you, though, so you may as well do your best to bloom. Am I blooming yet? I’m not sure, but I’m positive that I’m trying. Follow this journey at Crazy Chronic Life. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: artant

Tiffany Early

Why I Write About Chronic Illness

While scrolling through my Facebook memories this morning I realized something: it’s been six years since I had my first major symptom flare. I’m still a little shocked by how all that has happened in that time. I’ve had to leave my career and adjust to being disabled. I’ve had to leave my house in a wheelchair or scooter. I’ve been to some of the top ranked medical centers in the world. I’ve learned to study ingredient labels, request accommodations and make contingency plans before I do anything. Of all the things I do now that I never would have dreamed I would be doing, writing is by far the nicest surprise. I’ve always loved writing. I still write stories in my head when I can’t sleep at night – the same as I did in elementary school (although there are way fewer talking unicorns in my stories now, sadly). However, in spite of the fact that writing is something I enjoy, it is serving a greater purpose in my life at the moment.   It’s how I processed my feelings. You guys, I have so many words to say. When I was undiagnosed/newly diagnosed, I had so much I needed to get off my chest. To be honest, no one was up to the task of listening to all of it. I was wearing Joe (my husband) down with the daily monologues when he came home from work. Blogging, journaling and eventually writing (co-authoring) a book has given me a place where I could say as much as I want without worrying about exhausting someone else. If someone doesn’t feel up to the task of hearing me out, they can stop reading. That’s way less awkward than having to say, “Girl, stop talking. I can’t handle all your feelings right now.” I’ve become an advocate. For a long time, I shied away from the word “advocate” because I thought it sounded hateful or confrontational. However, at this point in my life, I am grateful for the chance to wear that title. Being an advocate doesn’t mean picking fights – it means speaking up for others. I am touched when my words give a voice to someone who is struggling to find their own voice. I am glad that I get to stand up (or, you know, lie in bed) and advocate for my chronic illness family, because I’m tired of feeling like I’m worthless just because I’m sick. Being a blogger has helped me to be bolder, more resilient and more aware of others’ struggles. Writing helped me find meaning in the chaos. Being sick is exhausting. There are still days when I’m aware that I’ve been in pain for so long that it has become my normal, and that’s a bit of a hopeless feeling. While I believe those who struggle have beautiful souls, that doesn’t mean I enjoy or appreciate illness. When I had to leave my job as a teacher, I felt like I was losing my ability to make a mark on the world. If I couldn’t teach and encourage kids anymore, what could I do? Through writing, I have met many other people with chronic illness. Sometimes we read each others’ writing. Other times, we cry over new diagnoses, or laugh at the futility of our tears. Regardless, through writing, I have connected with a whole new world of people who need support. Maybe my mark on the world isn’t what I thought it would be, but if I’m helping to ease someone else’s pain, that’s enough of a mark for me. Friends, I know writing isn’t for everyone, but I encourage you to find a medium to express yourself. Our community needs more voices, more art, more music, more of whatever you do. I am grateful for the ways writing has enriched my life, and I look forward to seeing where it will take me in the future. Peace, love and health, friends. Follow this journey on Crazy Chronic Life. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Sasiistock.

Tiffany Early

Types of People to Unfollow on Social Media If You Have an Illness

You know how in the “Harry Potter” series the Hogwarts’ students take a Defense Against the Dark Arts class? Well, like a good little Hufflepuff, I’m seeking to remove some of the darkness from my own life via social media. Now, I personally hate “unfriending” anyone on Facebook because I don’t want to hurt anyone’s feelings. (However, if the person is being aggressively hateful toward me, I’ll unfriend and block them for my own sake.) But, I’ve recently become a fan of a new “defense” that keeps me from sinking into the darkness of my more negative social media friends (you know the types of Slytherins I’m talking about) – the “unfollow” button.   Let me explain how this works for the less tech-savvy – like me! If you click on a Facebook friend’s name, then click the “Following” button, you have the option of “unfollowing” that person. By unfollowing, you are still friends with the selected Facebook user. They don’t receive a notification that they’ve been unfollowed, and you will no longer see their posts. Who do I unfollow? The people who bring more frustration than joy into my life through their social media postings. I’ve listed a few examples below. 1. Peddling Paula Let me be very clear: I have a lot of awesome friends who sell products online, and I wholeheartedly endorse their endeavors. However, I also know people who sell health products in the absolute least sensitive manner possible. You know who I’m talking about. Peddling Paula will openly mock anyone who is sick and say they would be better if they would only buy her magic elixir. Paula will track down any post that hashtags chronic fatigue or pain in order to try to sell you overpriced vitamins that will make your hair grow, behind shrink and breath smell like daisies. Peddling Paula will make you question whether you’re doing all you can for your health – even though you’re spending every day doing physician-approved treatments for your illness. I assure you: unfollowing the peddler will make your life less complicated. 2. Pray-It-Away Paul I’m a person of faith, and I am very grateful for the lessons of grace and compassion I have learned through my personal faith journey. I will gladly pray for you when you ask me to do so, and I believe there is power in that action. Having said all that, let’s talk about Pray-It-Away Paul. Paul is that guy who constantly posts on social media saying things like, “If you pray to remove the sin from your life, your illness/ afflictions will be over.” Or, “God blesses me with health because I thank him for it every day.” No, Paul. That’s not how it works. Prayer is not a magic spell. You can’t use it as a way to ward off illness. A person who is ill (physically ormentally) did not choose to be in that condition simply because he/she chose not to pray enough. Instead, that person is sick because life is sometimes unfair. Fortunately, I don’t believe God is working on a merit system where He gives good things to the people who please Him and chronic illness to everyone else. So, sorry, Pray-It-Away Paul, but you’re unfollowed, because I don’t need you questioning my faith. It’s fine without your input. 3. Political Pete I ran into Political Pete during the last election cycle. I have no clue why everyone decided to let their ugly hang out for six months or so, but, let’s be honest, it wasn’t pretty. Political Pete was the person who kept saying things like, “I can’t wait until [insert candidate of Pete’s choice here] is [insert political office of Pete’s choice here], because he/she will put all these fake disabled people back to work.” Ugh. Pete, you’re a jerk, andyou don’t even know it. Now, if Pete knows “fake disabled people” – meaning imaginary people with ailments – by all means, his imaginary friends don’t deserve any type of benefits. However, if Pete is referring to real people who are ill that he doesn’t (in his non-medical, non-professional opinion) deem sick enough to receive benefits, his opinion is not welcome in my life. I am not specifically hating on any political party. Rather, I’m saying if you are using your political opinion to demean others, then you’re a jerk, and your opinion does not need to be shared with others. Bye, Pete. 4. Pouty Petunia Petunia is the friend that is always upset with someone or something. I get it. I have my pouty days, and I’m sure I’ve had my fair share of “woe is me” posts. We all have our Pouty Petunia moments. However, if you have a person in your life that always brings you down, limit your interaction with him/her. Petunia is the person who in one day is mad because she has a cold, commercials are loud, water is wet and once, when she was 6, someone called her a doo-doo head. Pouty Petunia will suck the life out of you in seven posts or less, and I promise, you’ll be happier if you unfollow her. Friends, I am very grateful for social media. It has enriched my life in a powerful way by making the world of those with chronic illness feel connected. However, I am also aware of the effect it can have on me, and I strive to remove all the negativity possible. It’s OK to remove someone whose posting offers more hurt than hope. Let’s keep our Defense Against (Social Media) Dark Arts-game strong, friends! Peace, love and health. Follow this journey on Crazy Chronic Life. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via StockRocket.

Tiffany Early

Being Disabled but Not Looking Disabled, #IAmtheFaceofDisability

Occasionally, friends, I get tired. I’m not referring to the fatigue that is common with my diagnoses. I am referring to the kind of mind-draining tiredness that comes from fighting the same battle. I am 32 years old and fully disabled. I have a handicap placard that hangs in my car. I have no shame in either of those facts, because there is absolutely nothing I can do to change my condition. However, I’m growing tired of defending my status based solely on the fact that I don’t look quite sick enough to fit others’ mental picture of disability. So, I’m saying this now on behalf of myself and the entire disabled community. Every disabled person is the face of disability. Whether or not a person uses a mobility aid does not determine their disabled status. An illness that physically alters appearance is not required for a disability to exist. Sometimes the face of disability is found at the hospital or in a treatment center. Disabled people often have complex medical needs that must be addressed in those types of settings. However, there are other times that the disabled go bowling or to a zoo. Just because a person has physical limitations does not mean they have abandoned all hope of ever having fun again. Today, my car was parked in handicapped parking. Today, it was necessary that I utilize the aid of my placard, because I could not have completed my task successfully without accessible parking. However, when I returned to my car, I felt embarrassed. A couple in the car next to me stopped and stared. I immediately wondered if I was walking slowly enough to meet their approval. I wondered if they noticed I limp on my right side. My hip has started dislocating again, and it’s making me a bit extra cautious when I bear weight on my right leg. Then, once I was in the car – still feeling the weight of their gaze as they craned their necks to inspect my disability placard – I felt ridiculous. I do not have to prove my disability to anyone outside the medical community. I did not ask to have a chronic illness. I did not choose to have joints that frequently dislocate. I didn’t special order my aneurysms because I thought they sounded fun. Why am I acting ashamed of something I cannot help? I’m over it. I am tired of feeling embarrassed about something over which I have no control. I refuse to apologize for not looking “sick enough” for some people. I am the face of disability when I am standing and cheering for my favorite team, and I am the face of disability when I am sitting in the hospital waiting for more tests and procedures. The encouraging part of this proclamation is that I know I’m not alone. There are so many other faces of disability throughout our world – faces who are sick and exhausted and frustrated. But also, faces who smile and laugh until their sides hurt. Let me encourage you to show your face. The face of disability looks like all of us who were dealt a difficult hand by life and still manage to smile. If you want, join me in sharing your selfie on Twitter and Instagram with the hashtag #iamthefaceofdisability. The world needs to see us, because staying hidden is too exhausting. Follow this journey on Crazy Chronic Life .

Tiffany Early

Phrases About My Illness to Say Instead of 'It Could Be Worse'

Somewhere along the way, a truly frustrating and seemingly dismissive phrase has snuck itself into our niceties and condolences. I understand the problem to some extent. If you’re not sure what to say to a friend who is chronically ill or struggling with mental illness, you might rack your brain and nothing seems appropriate. But you want to say something. I get that; I really do. But I think there are better options than telling someone, “It could be worse,” in response to their pain. Don’t get me wrong — if that’s something you tell yourself to deal with your own personal crises or pain, I’m not suggesting you change that. However, among my chronically ill friends, I keep seeing people hurt or confused by the same phrase, so I want to shed some light on why it might not be the best commiseration one can choose. To me, this is the number one reason we need to remove “It could be worse” from our stockpile of phrases; it sounds dismissive. When you tell someone this, it can feel to the other person like their pain is not enough to warrant your concern — that they aren’t allowed to feel bad because their pain could be worse than it is. I truly believe that we, as fellow humans, can do better than that. I have an admitted flare for the dramatic. I tend to speak in hyperbole, and I make an effort to be aware of that extreme part of my personality. However, in spite of all my diva tendencies, I have never claimed to be at the absolute maximum of suffering. I don’t think any of us have. At no point have I said, “My suffering is officially worse than all human suffering.” So why would someone take the opportunity to tell me it could be worse? I know that. Trust me, at one point, life was better, so I know things can be worse. Let’s imagine if you used the converse. Imagine a friend comes to you and says, “Oh my goodness! I just received wonderful test results! Let’s celebrate!” And you reply, “Well, it could be better. You could have wonderful test results and have won the lottery. This isn’t worth being excited about.” You see, friendship and general empathy doesn’t exist in a world of comparisons. A friend shouldn’t tell others what is worth their time or someone else’s grief. Just be a friend. Comfort the hurting. Cry with the crying. Share cookies with the grieving. To each and every person who has reached out to me and tried to comfort me as I’m dealing with illness, please know you are appreciated. If you said the “wrong” thing, I assure you, that was better than saying nothing. I am not trying to personally indict those who have said this phrase. But I’m trying to suggest that we can do better. Have I been guilty of saying this? Heck, yeah. Am I resolved to do better? Absolutely. Here are some phrases that are certainly less hurtful and possibly more helpful for me: 1. I am so sorry. 2. Is there anything I can do to help? 3. I’m here for you if you need anything. 4. You’re not handling this alone. Why do these phrases work for me? They acknowledge that the present situation stinks. They don’t minimize the pain someone else is feeling, and they convey some empathy. Being a friend is active. It isn’t about saying the right words to quiet someone. It’s about being there, listening, loving, praying and hoping with your friend that life gets better. Let’s save all our judgments for reality TV and keep it away from our friends. Peace, love and health, friends. Follow this journey on Crazy, Chronic Life We want to hear your story. Become a Mighty contributor here . Thinkstock image by Rinky Dink Images

Tiffany Early

What It's Like to Live in a Small Town With a Rare Disease

The shower head in our bathroom won’t stop dripping. It’s incessant “drip, drip, drip” keeps Joe and I awake at night. I catch myself nodding my head in time with the drips. It has essentially become the metronome of our existence at home. We’ve tried everything to fix it. We turn the shower on and back off again. Sometimes that slows the dripping- other times it gets worse instead. We’ve cleaned the shower head and the on/off lever. Sometimes we push really hard on the nozzle in hopes thatwe’ll make the shower completely stop running water. It doesn’t work. Nothingworks. Now, some of you are saying, “Why don’t you change the shower head?” Well, that’s a fine idea, but it’s not exactly in mine and Joe’s skill set. You see, Joe and I have a variety of gifts and talents – none of which include plumbing. I mean, technically, Joe fixed our sump pump a couple months ago, but he used a couple dumbbells and duct tape to do so. I’m not sure that solitary experience makes him qualified to change out shower fixtures. I once fixed the toilet chain in a college dorm toilet (seriously, CumberlandCollege, why was I fixing my own toilet?) with a paper clip, but again, that’shardly professional experience. It has come to this – we need a real, licensedplumber. That comes with its own set of difficulties. It takes days of sittingaround the house before a person actually shows up for non-emergency waterproblems. Real, licensed plumbers are way more expensive than mine and Joe’spseudo-expertise. At this point, we have just accepted the shower drips, and that’s a strange quirk of our home. Why do I think you care about my plumbing woes? Well, I don’t suppose you do. However, the drippy shower has become my constant analogy for living life with a rare disease. My body has several medical “quirks.” The quirks are the background noise for everyday. But, at this point, I don’t have the time, energy, or money to address the issues. Much like my dripping shower faucet, my aches and pains have become such a part of my existence, that while I’m not happy with the situation, I’ve accepted them as part of life. My pain is not adequately managed, and I don’t always deal with it well. However, small town medicine is about as effective with managing a rare disease as Joe and I are at handling our plumbing situation. I have great doctors, really. I am sure they are great with managing many common illnesses. I feel like if I were a typical patient and went to any of my medical team with strep throat or high cholesterol or any number of other common problems they could handle it beautifully. Let me be clear – my frustration is not directed toward local practitioners. My frustration lies in the fact that awareness is lacking, physician education is lacking, and I’m the one struggling. Unfortunately, when you’re a “zebra” in the medical community, your problems are anything but common. Even when my complaints are “common” there’s always a rare disease (and its complications) to take into account. The people that are equipped to help me (you know, the ones who have actually heard of my illness) are hours away. They’re in clinics with a two-year waiting list. But, I’ve never really had a medical issue that I’ve thought, “Wow. This should probably be addressed 24 months from now.” That’s not how illness works either. It’s complicated. It really is. For my friends withcomplex medical issues, medical care is pretty much a gamble. We are begging tobe heard (drip, drip, drip), but we are blending in with the masses. I get it. I don’t expect many doctors in small towns in America to be experts in any rare disease. I’m not blaming doctors for this discrepancy. I’m simply saying this life is difficult. My medical issues aren’t easily addressed, and I am tired of being turned away. My illness is a constant dripping that keeps me up at night — praying that at no point does the drip turn into a gush — and knowing if it does, I’m poorly equipped to handle thefallout. Follow this journey on Crazy, Chronic Life We want to hear your story. Become a Mighty contributor here . Lead photo source: Thinkstock Images

Tiffany Early

Response to Those Who Don't Understand Why I'm Smiling and Sick

My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once said to him (not an exact quote), “I understand Tiffany’s illness, and I think people believe she’s sick. It’s just hard for them to understand when they see her out and she’s smiling and bubbly.” Hmm. OK, I’m typically the great empathizer, so I can try to understand what others see. I can understand to a degree that it’s difficult for people to see a 30-something with a loud voice and ridiculous laugh and reconcile that with the stories they’ve heard about me being ill. I suppose I can understand how it’s all confusing. But, geez Louise, people! How on earth am I supposed to act? If I’m in public, I try to act like I belong in public. I don’t leave the house if there’s no chance of me staying conscious. When people ask how I’m doing, I say, “Fine” or “The best I can” and I smile. That seems normal, and that’s how I’ve chosen to handle my illness. If I know that I have an event to attend (even if it’s a seemingly “no big deal” event like dinner with friends or an evening basketball game), I prepare the entire day beforehand, so I will seem “fine.” I rest more than normal. I don’t lift anything or do any exercise, so I can protect my joints. I eat foods that aren’t likely to make me sick. There’s a lot of work that goes into appearing “fine.” The problem with so many people who live in my world of chronic illness is that we never fake being ill — but we’re masters at faking being well. I think it makes people uncomfortable if I’m honest about how I’m feeling. Think about it. If you say, “Hi, Tiffany. How are you today?” and I reply, “I feel horrible. I just popped in a dislocated elbow, and I’m really nauseous now” then the conversation is awkward for everyone. You might suddenly feel like you have to offer me some sort of comfort (You don’t.). I feel awkward, because you’re pitying me. It’s just more difficulty than I want to add into running my errands or joining my husband at a football game. An acquaintance recently asked if I’m “doing better now.” Well, that’s complicated. In that exact moment, I had been running errands for a bit. I was drenched in sweat and shaky. In that moment, the answer was “no.” In life in general, I have a chronic condition. There will always be good days and bad days. There will more than likely never be a time of being better or worse, because symptoms seem to come in unpredictable waves — the kind of waves that sweep you off your feet and make you eat sand and get salt in your eyes. However, the best response I could give this person — who had all the best intentions — was to say, “I’m trying my best to do better.” Cue the smiling and awkward giggling. So, for the sake of everyone else, I’m going to keep giving oversimplified answers to difficult questions. Please, don’t misunderstand. I appreciate that people include me in small talk. I choose to keep my answers simple, even if they don’t accurately describe my current condition. I don’t feel like I’m lying — I’m shielding people from an uncomfortable truth. We all do it to an extent. To the people who don’t feel like I act “sick enough,” I have no apologies. I’m doing my best to handle this life — same as you. I’m open to questions, because I understand that my reality is quite different from that of my peers. Let me share with you about my world. There are needs and concerns that exist for my chronic illness friends that others our age have never considered. I don’t expect those who don’t live this life to understand. I don’t fault anyone for not understanding either. I’m simply asking for the benefit of the doubt. Trust me, with this body, I’m bound to prove to you that I’m sick if you watch for a bit. Peace, love, and health, friends. Follow this journey at Crazy Chronic Life.

Tiffany Early

Chronic Illness: How I Cope With Falling

Here’s a truth I don’t care to admit: When I’m upright, I spend most of my time hoping I’ll stay that way. The reality of worsening and limited mobility is that I’m forever afraid of falling. I joke that any day I’ve managed to keep my butt above my ankles is a dang good day. To be honest, that’s a pretty high standard for success in this body. Literally minutes before typing this, I lost my balance while bending down to open a container and fell onto my ample behind. Thank goodness for its, uhm, “padding.” While lying on the floor deciding if I needed my husband to come help me out of said floor, I started thinking about the stages of falling, and I quickly decided my friends with chronic illnesses would possibly identify with my challenges. Stage 1: Confidence. I haven’t walked around with total confidence in a while. I always feel like I’m testing out my joints and hoping for the best when I take a step (or, God forbid, walk down steps!) However, it’s always in the moments that I forget how careful I have to be with janky joints that I end up biting the dust. Stage 1 is the most unassuming of all the stages. It’s also the most unavoidable, but seriously, who wants to avoid having confidence? Stage 2: “Oh, crap!” Stage 2 is that awful moment when you realize your plan has gone awry. It feels like the sudden onset of a stomach virus coupled with the awful realization that you’re naked. Lovely visual, right? The “Oh, crap!” moment is worse than any injury because your brain moves at lightning-fast speed. During the split second I’m falling, I manage to have the following thoughts: “Who’s watching?” and “What am I going to hurt?” (Side note: I have a rather expensive bladder pacemaker inserted in my left hip, so I’m very careful to never land on it if I can help it.) I also manage to think, “Am I wearing a dress and is there any chance of me flashing my unmentionables to the world?” and “Don’t say anything crude or vulgar!” (The struggle is real, friends. When you frequently dislocate joints or tumble onto the ground, you have to develop a list of family-friendly interjections. My current favorite is, “Holy Potato!”) In the .04 seconds that I realize I’m about to have an impending crash, my entire life — or at least my entire current situation — flashes before my eyes. Stage 3: Crash! Bang! Pow! Occasionally, the “Oh, crap” stage doesn’t lead to a fall. Occasionally, I recover, look around to see who noticed and act like nothing ever happened. Typically, though, Stage 2 leads to Stage 3. Stage 3 is that moment when you hit the floor. I’ve learned to land on the most padded part of my body — my behind. It’s not nearly as noisy, and there’s not much there to break (assuming I avoid that left hip) or dislocate. The most important part of Stage 3 is avoiding injury as much as possible. Stage 4: The assessment. This is the part after you’ve hit the floor when you have to decide if you’ve wounded your body or your pride. It’s tough to tell. The waves of embarrassment, hilarity and adrenaline hit much harder than a physical injury. However, before you jump up from your prostrate position — seriously, there’s no “jumping” on these joints — you have to take an inventory of injuries. Have I hit my head? No. Has anything dislocated? Probably. Is it fixable without an ER trip? More than likely. Stage 5: Keep moving forward. There was a time when I grieved over every stumble. I worried that someone had seen my body admit that it’s ill. You know what? I’m over it now. I make every effort not to fall in public. However, if it happens, I’ll get up — as soon as I’m able — and keep moving forward. Chronic illness and disability have so many limitations, and I refuse to let my own pride become one of those constraints. For now, I’ll laugh when I’m able — because, come on, sprawling in the floor is a little bit funny — and cry when I must. Peace, love and health, friends. Follow this journey on Crazy Chronic Life . Lead photo source: Thinkstock Images