woman typing on laptop

When you are handed a life-changing diagnosis you face many choices about how you will handle the news. Will you take to your bed and run countless Google searches? Do you choose the path of denial, ignoring the diagnosis and going on as if the sky is not falling, dealing with it only when things get so bad you have no choice? Are you the type who prefers the Lifetime movie heroine, the cockeyed optimist who cheers up everyone around her, confiding “the news” to those only in your inner circle but proclaiming to all you know you can beat this, impressing everyone with your upbeat, positive outlook?

Social media has completely changed how we engage with the world and our illnesses are no exception. Have a cold? Post a Facebook status and a request for the best gluten-free matzo ball soup. Trip to the ER? I’ve seen status updates I swear were posted from the back of the ambulance.

We live in a society that “shares” and as such has created wonderful opportunities for awareness and a sense of community where many of us with lesser known diseases previously had none. When I was first diagnosed with fibromyalgia, I knew no one else with it, and only a few had even heard of it. Hashimoto’s thyroiditis? Most looked at me and asked if that was a sushi roll.

By the time the “big one,” lupus, came along, the feeling of isolation and fear was beyond measure. I was already cautious about how much I shared my health struggles on social media and now I faced yet another obstacle. I’d seen those friends who lived their lives online and shared every detail and I knew that wasn’t my personality. As a public school teacher, I’ve always been conscious of what I’ve posted. How could I merge this new “truth” of my life without sacrificing my privacy? How could I be honest with my friends and family without sharing how my world was being turned upside down?

In the beginning I erred on the side of extreme caution. As I was in and out of the hospital those first months, you’d never know it from my news feed. I learned to use “coded language” to let the few who even knew I was in the hospital again know I was home. (“There’s no place like home” carries a lot of meanings in the eye of the beholder.)

Looking back, I think I was so afraid of being the “over-poster,” looking like I was seeking pity or, even worse, attention, that I don’t think I even used the word lupus until we were fundraising for my first lupus walk.
Slowly, I began letting people know through informational posts during May, Lupus Awareness Month, facts about the disease as my way of sharing my story in a generic, non-threatening way. Perhaps I figured if people knew more about my disease they would understand more of what I was going through.

Unfortunately, facts are just that: facts. They lack the personal animus that give them life so slowly over the past few years I’ve begun letting people into my world with chronic illness.

This is what led me to finally decide to share my stories with The Mighty. I was tired of playing the plucky upbeat Lifetime story of my life online. Am I scared about the possible ramifications of sharing my truths in this way? Absolutely. Do I worry about being judged and derided for my decisions about sharing my stories? You bet.

But I’m too tired fighting for my life and balancing too many medicines and too many doctors and too many complex medical conditions and working and my husband and two beautiful children to worry too much. Because when it comes down to it, it’s my truth and my stories to tell and I get to hold the pen – not some Hollywood screenwriter. And if sharing my stories can help some scared person out there who needs to know they’re not alone then it’s worth it.

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Thinkstock photo via opolja.


Today I was approved for a new medication and I’m elated…and terrified. After too many years, too many meds and too many hopes, I’m trying to go into this with a sense of “cautious optimism.” Will this work? How many doses will it take? Will this be the “magic bullet” to finally throw the lupus beast into the word I only whisper…remission?

Five years ago the decision was made that my lupus was progressing to a point where we needed to treat things more aggressively, and a more heavy duty chemotherapy agent would be needed. My beloved rheumatologists sent me to the most cutting-edge lupus research center where they would have access to the most up-to-date dosing treatment plans.

As I met with the kindest, most human doctor, he laid out all of the risks of this new medicine, Cytoxan. Words like “increased risks for bladder and other cancers,” “hair loss” and “nausea” flowed but I signed all papers, shocking the new doctor with my usual dark humor in these situations – cracking jokes to dispel my fear and discomfort. But a desperate woman will cling to any piece of driftwood when she is drowning and if this meant there was a chance of beating the lupus, I would take the risks.

Once a month for sixth months, my husband and I would wake up early, drop our children at my dear friend’s house, drive over an hour into Philly and prepare for the six hours at the hospital infusion center. Cytoxan is such a toxic drug (it says it right there in the name) that there are bags upon bags, hours upon hours of fluids and other medications that must be administered before and after the actual drug to protect you.

I had been given good advice to get a chair “near the bathroom” (best advice ever) since all of that fluid means lots of trips to the bathroom. Remember that dark sense of humor? Well, every time I needed to use the facilities I would entertain the nurses and others with my rendition of “pole dancing,” a.k.a. boogying with my IV pole as I always had some music playing.

For the actual Cytoxan administration, I had to give it a “theme song” (I’m a musician – occupational hazard). Since we were in Philadelphia, I decided to use the “Theme from Rocky.” Each month when it was time to start the actual Cytoxan portion of the infusion, I would play the music and positively imagine the meds punching out the lupus. Each time we’ve added a new lupus med it’s received it’s own theme song. It’s just something I do. We all have coping mechanisms. Dark humor and theme songs help me.

EJ, my husband, and I had a ritual where he would get us lunch from one of the food trucks outside of the hospital. We knew I’d be nauseated for the next few days and it would be my last good meal for a while. We read, watched movies, talked, laughed and passed the time together. Together, as a team, we faced this battle, praying this would keep the monster at bay, since there is no lupus cure.

The nausea usually hit about 45 minutes into the return trip. The next few days involved a fatigue unlike any I’d felt before. Each month, the effects were worse, the impact greater. In August I went to set up my classroom. After a short period of time there ended up putting me in the hospital, the decision was made that for the first time since I’d started teaching, I would not be in the classroom in September.

My hair thinned dramatically so I cut it short. I put on a lot of weight, making me quite angry. Exhausted, physically distorted and miserable, I soldiered on because I believed this would help me. This new med would be the one to return me to some semblance of the life I used to know. My children needed their mother back. My husband deserved a wife who was a functioning partner. I missed my students, my classroom and teaching!

If this was a Disney story, this is the part where everything comes together. The meds work – the lupus goes into remission. There’s a fabulous montage set to some up-tempo 80s hit of me going back to work, rejoining my life, losing the weight, growing back the hair and running a 5K for lupus research. Throw in furry woodland creatures to make me a fabulous dress for the ball scene with my husband and I’m in!

But life isn’t a Disney movie. It was a slow return. Returning to work was exhausting. I would get home and fall asleep on the couch at 4:00 p.m. It took four years to lose most of the weight I’d put on, only to play “Taper Tango” with the Prednisone and gain some back when the doctors had to raise my dosage. Some of the hair grew back but the top remains quite thin and those damn squirrels do nothing but dig in my trash. Worst of all, remission was not in my cards. After all of that, I had about four “good” months and things went back to the new normal.

So here we are again. About to embark on a new adventure, a new medicine, a new chance. Benlysta, the first official lupus drug, has proven to be a “wonder drug” for so many in the lupus community. I’ve done my research, I’m part of the online support community. I’ve signed the scary paperwork about all of the risks with my usual barrage of dark humor jokes. I’ve given it its theme song. I have to have hope – you can never give up hope. But I’m a little more cautious, not pinning all of my hopes on “Benny” as we’ve dubbed the med.

If I’ve learned anything from the fairytales and Disney movies of my youth, it’s that sometimes you have to kiss some frogs to get your prince.  So…Benny…are you my prince or just another frog? I guess we’ll just have to wait and see.

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Thinkstock photo via BrianAJackson.

Living with lupus is a bit like having a puzzle with a missing piece. You may not notice initially, but when you start to put it together, you realize it’s not quite right.

Maybe you push the thought of the missing piece out of your mind for a while, but as you near the end of the puzzle, you can’t ignore it. The lost fragment means the puzzle is never truly whole.

Sometimes, just for a short while, I can fool myself into forgetting that I’m not sick. As I’m on the final set of reps in an exercise, sweat beading on my forehead and determination are the only things driving me forward, and I feel strong and powerful. I feel healthy. And in that moment I forget that what’s inside of me doesn’t match what everyone else sees on the surface.

I’m fitter and stronger than ever. I’ve put in hard hours at the gym, with the conscious goal of improving my physical condition, and the results are evident: It has absolutely paid off.

The example that makes me proudest is my blood pressure. Nearly a year ago I was admitted to an ER with a range of symptoms. One was blood pressure so high that doctors couldn’t understand how I hadn’t experienced cardiac arrest.

It’s never a good sign when doctors repeatedly double-check your blood pressure. It’s like they’re hoping that the next round shows that the first reading was a bad joke. My hard work has led to me being able to boast that not only is my blood pressure good, it’s now in the excellent range…And I can feel it!

But the thing is, no matter how hard I train or how healthy I look and feel, I live with the harsh reality that I can never attain the status of 100 percent healthy.

I could eat the most nutritious foods available, devote my life to exercise and fitness, ban all alcohol and excess sugar and fats from my diet for the rest of my life, but 99 percent is the best I can hope for.

You never know how bad you want something until you can’t have it. I regret taking my good health for granted. I never appreciated it when I had the opportunity.

Nowadays, I’d give anything to know that I had the good health a lot of people do. But it’s not going to happen.

It doesn’t matter how much I want it, or what I’m willing to give up. Part of me will fall under a category that’s nowhere close to healthy.

Maybe “healthy” is just a word, just a label, but it upsets me to know that perfect health will never again be an achievable goal for me. It hurts to know a piece of my health will always be missing.

A single, irreplaceable piece that lupus has stolen forever.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Thinkstock Image By: Ryan McVay

When I close my eyes I envision a vibrant, fair-skinned 26-year-old woman. A woman with blonde hair, sparkly bright blue eyes and an unforgettable, warm, beaming smile. She is dressed in a colorful dress. She is loved by all, always smiling and has this tremendous ability to fight adversity.

When I open my eyes I see a pale-faced 26-year-old. A woman who has battled and fought for survival since the tender age of 3. Her eyes are red and puffy from the tears that won’t stop falling. Her eyes are closed off to the world, closed tight to hide the pain. Her once prominent smile has dissolved into gritted teeth. Her breath is shallow and fast. Her face round and puffy from the increase of Prednisone. Her hands shake and her heart races as she looks down at her once functioning body. She struggles to straighten her hands. The sight of her finger joints being stretched and pulled out of place from years of horrible pain. Fingers that should be straight are bent at sickly angles. Surely these aren’t the hands of a 26-year-old? The next unsightly joint is the seven-inch scar on her knee. Perhaps from a shark bite? Surely not damage done by her own body!

seven-inch scar down a woman's knee

Pain is many people’s nightmare – but what happens when pain is your everyday companion?

Pain is what happens when she attempts to get up from her bed. Her wrists and fingers ache as she pushes herself up. Her hips scream out when they are swung over the bed. Next comes a great big breath – a breath to psych herself up. The chants begin in her head: “You can do this,” “Breathe!” and “As soon as you have done this you can come back to bed.” She reaches down and grabs her crutches. On the count of three she uses the quickly vanishing energy to get to her feet. The room becomes dizzy as she catches her breath. Pain searing through her joints. It takes every bit of strength not to collapse back down onto the bed. The next step is the so-called “normal” ability to walk. Crutches first, then legs. She hears a noise only to realize it was her own grimace. Finally the bathroom is in sight. The thought of continuing out to the lounge is too distressing so her body crumples back into bed. Body shaking from the pain. Maybe tomorrow will be better? But what happens when tomorrow hasn’t come and your spirit becomes weak and the fight becomes too much? There is no magic drug, no button to push to eject yourself from your body.

Emotionally she is hurting just as much. Life has been flipped on its head and what control she once had is now taken over with pain medication and tears. It’s the tears that scare her. She knows things are bad when the tears start. When the image of her former self seems more like a memory than a reality. To her tears mean that lupus has finally got to her. Lupus has broken her. Lupus is in total control. She is only a host now. She is filled with sickening anxiety. Every decision she now makes has the ability to cause even more pain. There is frustration, anger, disappointment and grief. But most of all she is scared. Scared of the power lupus has. Its ability to cause such pain and distress. Such disability and despair. She is scared of the amount of medication she swallows daily to try to receive some relief. She is scared about lupus upsetting those she loves. Her family and friends having to see her struggle.

But even through it all, a tiny voice keeps telling her to hang onto hope.

Hope that the pain will decrease.

Hope that her mobility will return.

Hope the medication will provide relief.

Hope her smile will return.

But mainly hope that tomorrow will be better.

This post originally appeared on Livvy Joy.

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Hold, hold on, hold onto me
‘Cause I’m a little unsteady
A little unsteady

– “Unsteady” by X Ambassadors

young woman sleeping in the sun

How much physical pain can one person handle? How much is too much?When does the brain decide to open up the flood gates and let out all that pain bottled up inside? How do you stop once you start? Why won’t this stop! I am so tired, I am so tired! Please, pain, stop!

My undoing was a glass of wine… Or was it last night’s sleepless night due to unrelenting rib cage pain, which caused every breath to be excruciating? Or was it that the only relief I could gain from unbearable bone pain was morphine? Or was it that I have been swallowed by this nasty flare for over three months? Or was it simply that I had finally reached my limit?

I think deep down I knew these feelings were coming. How long can I survive physical pain before the emotional pain catches up to me?

I am a bottler; I know this. From an early age I have had the mentality that this is my reality; let’s just deal with it. Let’s look on the the bright side, be optimistic and everything will be OK. A lot of the time this does serve me well. I wouldn’t survive without this positive outlook. My problem is I bottle for too long sometimes. I keep it all held tightly inside and then become scared to let it out because maybe my fear won’t stop. I bottle to protect myself and I bottle to protect those around me.

Tonight the lid released…and the contents poured down my cheeks and pooled at my swollen feet.

I sit here tired. I sit here absolutely shattered. My soul is exhausted, my body is drained and my mind is numb. The only thought I can form over and over is, “I am tired, I am tired, I am so very tired.” It’s the kind of bone-crushing fatigue that no amount of sleep will fix. The type of fatigue that even when I am lying down I feel like my body is going to collapse from under me. The type of fatigue where talking becomes a mammoth task and sometimes even breathing feels too exhausting. I wish I was just “tired” but in reality it is so much more than that five-letter word.

Tonight I sat in my quiet house and I finally let myself cry…I let myself sob. Cry out the physical pain, cry out the frustration, cry out the limitations and restrictions, cry out the life that I feel I am missing out on. Just cry because I simply feel sad. I love my life, don’t get me wrong  – I have so many blessings. But right now it is just so damn hard. Pain is so cruel and overpowering.

Tonight I give myself permission to feel these emotions, to admit I am struggling and to allow myself to cry because the reality is that it is really miserable to be in a body full of pain. I need to allow myself to feel these emotions instead of blocking them out. It doesn’t mean I am not coping and it doesn’t mean they will never stop.

It is OK to cry, Liv. You are not failing anyone. Let that guard down!

Tomorrow I will pick myself up and I will keep fighting because even though my pain is unrelenting, right now I know deep down in my soul I am that little bit tougher; that little bit more stubborn. There will always be a part of me that is stronger than this pain, even if at times it is only a tiny particle. I can allow myself to fall apart but I must pick myself back up.

For now, Liv, just rest – close your eyes and rest. You have been so brave and just like all those times before you will be OK!

This post originally appeared on Livvy Joy.

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What helps me to approach my disease more positively is accepting it as just another part of me – as valid as my messy hair, my legendary clumsiness or my unconditional love for pizza. It deserves to be addressed and given its own space, and these are some of the ways I’m getting to that.

1. Learning about lupus.

While lupus still remains a “mystery,” there are a bunch of online resources which document what is known so far. (It is one of the things which makes me incredibly grateful to have easy and regular access to the internet.) I try to stay updated about several aspects of the disease, including how it affects different body parts, side effects of medications and what researchers are currently focusing on. Not only does it help me to develop ways to better manage my disease, but – I’m not even sure why – it is also weirdly empowering to know what’s going on and to be able to explain it to yourself and to others.

2. Reading other patients’ stories.

For a start, going through social media posts from other patients helped me confirm patterns which I noticed about my lupus but have not yet been medically proven. One such example is how I had the impressions that my periods could cause lupus flares, but I couldn’t find a single medical article which proves this to be true. Yet, by going through forums, I read messages from a lot of other patients who also experienced flares during their periods, indicating that perhaps this is fairly common. Another perk of going through articles written by fellow patients is that they tend to cover more practical and emotional aspects of daily life with lupus or another chronic illness.

3. Asking questions.

Closely related to my first point about educating myself is getting actively involved in the process of learning by asking questions. I usually write down questions/issues as they pop up and arrive to my appointments with a list. I’m lucky enough to have healthcare providers who take the time to address my concerns and who admit their own limitations when my questions get into an area of lupus which cannot be explained yet.

4. Proper organization.

Having my own system of medical records allows me to track my health and to be equipped with accurate information whenever I need to see a new healthcare provider. Some of the tools I use include: a diary with daily entries about my meals, medicines, weight, hours of sleep and symptoms; a file containing prescriptions, blood test results and receipts arranged chronologically; and my phone, daily diary and desk planner on which I note appointment dates (and questions to be asked during those!).

5. Communicating my needs.

Managing my diet, activities, sleep and other parts of my lifestyle is as important as adhering to a treatment to control lupus. It tends to be embarrassing to be the family member/friend who constantly requests “Can we do this instead of that? Because of lupus, I…” but I’m slowly trying to get past the discomfort and the impression that this makes me a picky/annoying person. It doesn’t make sense to keep quiet about my illness and then be annoyed at people who “don’t get it” (as I initially did) or to simply opt out of certain activities rather than coming up with alternate ways in which I can participate (which I also did). Speaking out is therefore a must. Over time, my loved ones have learned to anticipate and accommodate my particularities – another one of those little things that makes my life easier and for which I’m utterly thankful.

6. Raising awareness.

A few weeks after my diagnosis, as I was browsing through ways to cope with chronic illness according to the Acceptance and Commitment Therapy, I came across this sentence: “Create meaning out of your pain.” Sharing information about lupus through a blog spoke to me: it gives me another reason to learn about that topic, it can be helpful for both lupus patients and those who know nothing about the disease and – as someone who studied and works in Communications – blogging, social media management and content creation allow me to exercise my skills and do something I enjoy. It turned out to be a great choice and, to me, few things are as rewarding as noticing that others show interest and want to know even more about lupus. Being told, “I went through your post, do you mind if I ask you some questions about lupus?” is always a win!

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Thinkstock photo via julief514.

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