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Since being diagnosed with ankylosing spondylitis (AS), an inflammatory arthritis that attacks my spinal and peripheral joints, I have spent the better part of two years trying with all my energy to control my disease. Once I heard my rheumatologist utter the words, “incurable autoimmune disease,” I shed a few tears right there on the exam table and, not taking a week or even a few days to grieve, I jumped straight into, “How can we control this? What medications are available and what are their success rates? What diet changes can I make? What does the research say about the drivers of autoimmunity? Will acupuncture help? Should I see a naturopathic doctor?”

I wasn’t going to accept a life of chronic pain, fatigue, and spinal deformity; I was going to find the capital A “Answer” to putting myself into remission, or even curing this thing. This disease was just a speed bump and I was all about getting over it and returning to my productive life. I wasn’t about to be taken down by it, not after having just survived multiple brain surgeries (that’s a story for another day; I have two brain conditions for which I spent a month in the hospital). Nope, no way, not happening! That was that. I threw myself into solutions. I had heard several stories online of people who had been diagnosed with rheumatoid arthritis or AS, or some other debilitating autoimmune condition, and they cured it with herbs or juicing or a macrobiotic diet — or even Shakeology (the older, wiser version of me would like to insert eye roll here). If they could do it, why couldn’t I?

After cutting out gluten, dairy, grains, legumes, nightshades and eggs — and taking a boatload of supplements — I was still largely unable to walk due to joint inflammation and severe pain three months later. I conceded to taking Humira, a black-box label drug in a class of medications called biologics, and it lowered my pain significantly for about a year, but not without side effects and infections. My agreement with myself was that I’d take the heavy duty and potentially dangerous immune suppressing Western drug, while committing myself wholly and completely to lowering my inflammation and healing my body naturally through the use of naturopathic and functional medicine. A logical plan, right? I would get to the root of this dis-ease and get past it.

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Well, the best laid plans often go awry.

Here I am, two-and-a-half years later, having gone through numerous naturopathic and functional doctor appointments, countless functional medicine tests and protocols, green juicing, supplement plans that made use of the most cutting-edge research on autoimmunity (including vitamin D, fish oil, turmeric root supplements, medical-grade probiotics, and countless others), food sensitivity testing, extreme diet changes to remove inflammatory triggers such as gluten, dairy, and grains, the addition of tons of nutrient dense foods at almost every meal (organic, grass-fed meats, omega-3 rich wild caught fish, tons of green vegetables, bone broths, healthy fats), massage therapy and acupuncture, restorative yoga, and many, many more efforts toward healing.

What do I have to show for these efforts? Currently, not much more than being flat broke. I have still experienced debilitating flare-ups, and the most recent required a course of prednisone that led to mononucleosis, for the second time in my life. It’s almost unheard of to get mono twice, but I did, due to the immune-suppressing drug prednisone. What’s worse? Ever since March 2016 when I developed this infection, I have been debilitated with fatigue so severe that I spend most of the day on the couch or in bed — and I’ve had to stop working. We’re now looking at an additional diagnosis of chronic fatigue syndrome, and I’m in the appeal process for long-term disability benefits after being rejected twice. At 29 years old.

I’m not saying my healthy efforts were all for naught, or that I’ll be giving them up. While I continue to feel inflamed and stiff and largely unable to move these days, I shudder to think of how I’d feel if I weren’t eating well and taking supplements. Plus, I believe both functional and naturopathic medicine have a lot to offer when it comes to the chronic, progressive diseases that Western medicine just doesn’t fully understand and doesn’t know how to adequately treat.

However, what I am going to stop doing is expecting these efforts to control my disease or symptom activity totally. I have realized — what with all my free time lying in bed this entire year — that my exhaustive search to “get better” has been due, at least in part, to my unwillingness to accept that I have a disease for which there is not yet a cure. By keeping my focus solely on “getting past” AS, I was able to avoid the pain of having to accept this truth. I did everything right, I ran the gamut from Western medicine to Eastern medicine to functional medicine to integrative and back again, and here I am, typing this on my iPhone while lying flat on my bed because sitting upright is impossible today. And it’s not because I failed at anything. It’s because I have a complicated, painful disease that is unpredictable. Plus, I’ve found that the doctors who have really progressive ways of treating autoimmunity don’t accept insurance, so available finances will determine who I’m able to see and what I’m able to do; many a night has gone by where I’ve beat myself up for not making more money, not saving more in my early 20s, not being born into a different family, and on and on so I can afford this care. I’m letting go of this. It’s not my damn fault! And it’s not any sick person’s fault that the insurance and provider situation in America is heinous.

Living inside a body you cannot control is one of the most disorienting, disempowering, and terrifying experiences there is in life. No wonder I’ve been running from it. Not knowing until you wake up in the morning whether you’ll be able to check off even one of the items on your to-do list takes a tremendous amount of emotional strength to tolerate. But rather than trying to reject my illness and get on with my life, I’m practicing radical acceptance of reality. The control I’ve been seeking is an illusion. For me, drinking bone broth and taking some vitamins are not enough to control something as complex and multifaceted as my autoimmunity. And I am not a failure for not being able to control it through these means. This disease will always be there, and I will always need to manage it, and I cannot control that I have it any more than I can control the clouds rolling in.

And PS: anyone who doesn’t understand that doesn’t get the privilege of being in my life — can I get an Amen?

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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It’s that time of the year when the festive melody of Christmas should soothe the mind and warm up the heart. But here I am, sans the cheer, recovering from a chronic back ache and nursing a state of mind that is only leading me into a pool of depression. A week’s holiday went under house arrest due to untold woes of inflammation. It may sound to be a state of ultimate rest — that’s what our body needs when you take a break from long working hours — but a holiday on a bed is the last thing on your mind as a way of relaxation. Well, I kept my chin up by telling myself, “Cheer up, Christmas is here and near!” Some holiday movies of the season and books did enliven the spirit that was otherwise doused with pain.

When you live with an autoimmune disorder like ankylosing spondylitis that leads to chronic pain and fatigue, a big risk you carry all the time is of unpredictability. I always keep myself prepared with what can strike and when, but sometimes the timing just hurts. And what do you do then? Pick yourself up, all by yourself, and look ahead. That’s what I have learned. Sometimes you just need to keep your mind cool and say, “So what if my holidays are spoiled? So what if I have unbearable pain, I need to get up and face the sun? Get the much needed warmth, taste the bitter sweet winter, wrap yourself with whatever energy you have and move on.” So here I am, looking forward to one of my favorite festivals, sipping my coffee, all geared up to form my New Year’s resolution. Today, as I sit through a calmer and lesser depressed mind, I realize life is only as tough as I see it, and only I can lead it to a better tomorrow.

So what’s my resolution for the upcoming New Year? While people will plan for a new home, a child, a new job, vacations and celebrations, I just hope and wish that I have enough energy and endurance to run my life. Yeah, that’s the resolution. The pledge to gain more strength, fight the fatigue, emerge more supple and mentally stronger with a dollop of motivation to feel good about myself. Now that sounds like the perfect New Year resolution in the condition I am in. I’ve realized that when you live life with a chronic disorder, what you most need is the motivation to overcome the fear of the unseen. Because it is this fear that holds you back. It makes you imagine an untoward future causing more and more mental agony. It’s so important to take one day at a time. It’s imperative to take up every challenge the disease poses to you and put your heart in fighting it. You need the angel within you to strengthen your determination to overcome your woes.

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Disorders like ankylosing spondylitis are not localized. It doesn’t just affect a part of my body. It tends to be systemic, affecting overall well-being and state of mind. It can instill fear, a sense of loss and disability; it can make me anti-social and dull my usual cheerful self. But it is still just a medical disorder. And my well-being is still in my hands. So while the town is painted red and green and I feel lonely within – I still know there’s a lot to look forward to. There’s a lot of joy of Christmas that is yet to come my way. I have put together a short list of what I want to do to make the next year better and am sure, dear readers, you may relate to some of these:

1. Strive to be fit and strong.

2. Shed the extra pounds and cleanse my body of toxins.

3. Make workouts a way of life – walk, dance, take up a sport I can bear, etc.

4. Discover peace of mind and try not to lose it

5. Make new friends and nurture old bonds of relationships, and most importantly…

6. Look at ankylosing spondylitis as a companion for life, know it better and forge a pact of kindness with it!

Believe me, I already feel good when I think of these resolutions. I know they are tough considering I barely have any energy to make so much a part of my life. But I am looking forward to drawing energy from fellow people. To reconnecting with a lost self, reading more, writing more, volunteering, spending time with loved ones and above all being kind to myself. There’s now a greater desire to go back to life’s motto – I will not let anything stop me.

Merry Christmas and a Happy New Year.

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First of all, I’m not fond of lying.

At all.

Yet, I have become the greatest liar. I do it when I don’t even think about it. I lie to make others feel better. I lie to make conversation easier. I lie to save time. I lie because I know that the other person isn’t really listening.

My greatest falsehoods are: “Oh I’m fine,” “I’ve got it,” “I don’t need anyone else,” “Today isn’t so bad,” “Nah, I’m not crying,” “I’m just tired.”

I am beyond exhausted. I stay up because I’m in so much pain from ankylosing spondylitis that I can’t sleep at times. And, no one can handle it. I hardly can. I don’t want to burden others with the truth. My truth.

Every single morning… I’m hit with a ton of bricks that this wasn’t just a bad dream. I’m not sure what’s worse — the pain, the flu-like feeling, the constant costochondritis (inflammation of the ribcage), the depression, exhaustion, or the grieving of my old life. It’s not in remission. It won’t be.

It’s 1:30 a.m, and I’m awake. In pain. It’s Christmas time. My favorite time of the year. The lights from our tree are glowing as I type my confession.

There’s still a hint of magic in the air for me. My girls are excited and looking forward to the magic of Christmas. The twinkle in their eyes is enough to hold on, as painful to my arthritic hands as it may be. They are my excuse to keep on with my verbal fabrications.

I’ll say, “I’m fine” as a war is being fought in my body. The war my body has waged on itself. Fusing my bones together.

I’ll fight to lie another day.

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When I was diagnosed with ankylosing spondylitis (AS), I felt like my life was divided into Before AS and After AS. Even in its infancy, After AS was denser and more disparate than anything light and whole that precipitated it. I lived in excruciating physical pain. I battled chronic fatigue and fickle vision. To move was to navigate quicksand with bags of concrete strapped to swollen limbs. My eyes, once green with silver halos, flamed furious in too-bright sunlight. Anterior uveitis, close cousin of ankylosing spondylitis, veiled my world in frosted glass.

After AS was heavy, nonsensical, and steeped in shadow. After AS broke my body and nearly broke my spirit. The disease loomed and stung without apology. It screamed chaos into the hollow of my defeat.

I gave myself a pep talk before crawling out of a bed left unmade. I chose between a hot shower to loosen stubborn joints and a loaded dishwasher because I calculated the energy necessary for blueberry waffles, a clothed toddler, and our drive to daycare. Then the harder work began: earning a living while my disease flared. I was the breadwinner. A diagnosis didn’t change the expectation that I would provide.

Whenever my After AS body slowed my progress, my spirit cried out and asked a question that never serves me well: why me? I watched a mother jog behind a red stroller, and I wallowed. Unable to reconcile a life lived at warp speed with my new reality, I prayed for my grief to roll away.

But in the bleakest season of my disease, when I thought AS reigned supreme, Grace was as much my reality as pain, fatigue, and their wicked dance. Glimpses of the Before AS me (pain- and fatigue-free) were woven into my narrative. I breathed and did. I was slow and tentative, but I was enough: more precious than gold and Skittles to a child whose greatest need, love, was met in plenty. In the worst of my worst, my best was good enough for my son.

One morning my best consisted of dry Cheerios because, in a pain-induced “brain fog,” I forgot to buy milk the day before. My son didn’t lament his organic, overpriced milk. He cared about love blown into backyard bubbles the same evening. We chased those bubbles until a gold sun dipped into pink and indigo. “Amazing!” he exclaimed. “So amazing!” Playing with my child of wonder when my bones howled was amazing.

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Today I realize that my tendency to divide my life into halves, into before and after illness without acknowledgment of the reprieves Grace bestows, is symptomatic of post-diagnosis pessimism. AS, known for its rudely unannounced twists and turns, had morphed the optimist in me into a pessimist.

And frankly it’s hard to shuck fear: fear of the unknown, fear of what new pain might riddle my body next. Pessimism and fear crave the deep dark; they work in tandem to extinguish light and smother hope.

I will never shuck fear for good. I’m optimistic about the likelihood of remaining in my current remission, but I catch myself fearing the future. I catch myself being human. I cope with fear as I tried to cope in the thick of my AS symptoms: by recovering Grace moments that hold me.

I revisit a portrait of my ginger son planting popsicle sticks in our garden. (Convinced that the sun’s gaze grew anything, he intended to plant pianos next.) I recall blue-green waves crashing against an Irish coastline that lulled me when I was younger. I memorize the precise shapes of these moments, and the experiences become my heart’s touchstones: reminders of a life defined by Grace rather than AS.

I accept that Grace moments lie behind and in front of me. Maybe my current remission will be permanent. Maybe it won’t, and that’s OK because struggle and joy can co-exist.

My choice to view my life and circumstances on a continuum, with Grace as much a constant as pain, fatigue, pessimism, or fear, may seem naïve and simplistic — especially on days when worry crushes optimism, and I must untangle myself from why me? thinking.

I’m committed to the daily surrender necessary to press forward into Grace, into holy, moment-by-moment reprieves from my disease’s unruliness and the pessimism it fosters in me. AS shapes me, but it doesn’t define me.

Before AS and After AS no longer reside in my way of thinking. Today there is only me, and I’m enough. Life with AS is still life. It hums.

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The holidays are among us. There are so many of us who are thinking, “How am I going to do it?” It’s usually financially, or emotionally.

But, think for a minute, about physically. That’s always added to our plates. It’s kind of like when you’re at your grandmother’s for Thanksgiving and you have made a huge plate of your favorite food. Then, you turn around… and notice you forgot a roll. Well, of course, you put the roll on top. And it teeters, and moves around, it’s become a balancing act to save that roll from the floor.

You are the roll, if you’re living with ankylosing spondylitis, or any other autoimmune disease.

I, literally, don’t know how I’m going to do it, at times. I rest between household chores. I always put the kids’ needs, even if it’s basic needs, first. Then, my little misfit zoo of animals. I tend to put myself last, as many of us do. Teetering as if I were that extra roll on the top of our favorite food at a holiday dinner.

As the holidays approach, I’ve had to make a very important decision. I can’t remove “the roll” from my life. It’s there. It’s not going anywhere.

And, chances are, not everyone will see you struggling. Some will turn your ” I can’t” into ” I won’t,” and you have to expect that.

Shop online. Wash your hair! (That’s specifically for me.) Make lists. Ask for help. Set boundaries. Don’t overdo it. Ask for help, again. Plan. Savor every bit of beauty that you can. Take naps. Talk about it. Say “I can’t.”

Plan. Plan. Plan.

Be mighty.

You don’t think you’re mighty? You got up out of bed today. That’s pretty mighty.

Happy early holidays,

Angila

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“You are so brave…” 

I just sat there staring at the message from one of my old co-workers, who had asked me how I was doing that day. My mind raced and I was in no way able to respond to this statement, meant to comfort me, during one of the darkest times in my life. 

I had five months earlier gone into a full flare from a degenerative form of arthritis known as ankylosing spondylitis, or commonly known as AS. I also was unaware of several conditions that had been plaguing me for years, being misdiagnosed for years due to my gender, my age, and my tolerance for pain. Ankylosing spondylitis was one of the main culprits, keeping me feeling off, almost regularly — it was as if I had the flu, without actually having the flu, tired, unable to concentrate, constantly in pain and often limping and forcing myself to work, take care of my home and try to carry on as if nothing were happening. I knew in my heart it was more than sacral joint disorder which I had been diagnosed with, without further investigation by doctors, who said, “You’re young, you have an amazing outlook, you’ll get better, we’ll fix you.” I knew better but I wanted to run away from the idea that my body was going through something that would basically turn my world upside down, and it did. 

In late February I had been putting away food at work and bent over and heard a popping noise — my sacral joint had come out of place. This is common for me. I pushed through the work day, went home and announced that I needed to relax. I lay on the floor in hopes of feeling better, but everything hurt — my ribs, spine, hips and sacral area were fed up, and they were going on strike. Giving in and realizing I had overdone it, I attempted to get up and felt an excruciating pain run through my hips. I couldn’t stand, I felt panic, anger, fear, and most of all ashamed. Here I am on the floor and I need help standing, walking, I even needed help adjusting myself on the couch. I could see in my boyfriend’s face this look of total helplessness; he by nature is a protector and provider, and he didn’t know what to do to make the pain stop.

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After months of seeking out doctors, I was formally diagnosed by a rheumatologist, who informed me it was not just ankylosing spondylitis. I was shocked to learn I have Ehlers-Danlos syndrome, a disorder that affects the joints due to my body not producing enough collagen, spondylolisthesis, degenerative disc disease and it is suspected that I also have fibromyalgia

For several months I waited to feel better, irritable from pain and steroids, and stressed about how my little family saw me. I was so depressed and anxious that my troubles started leaking out onto social media.  

People were telling me of fad diets, supplements that had the magic cure-all, and I was told that if I just cheered up I would probably feel better. I was so annoyed, hurt, angry and above all clueless as to how no one understood. At that moment I realized, I have invisible illnesses, and I had been fighting and pushing myself for so long it had made it become difficult for everyone around me to realize the severity of my situation.  

I wanted to take a new approach and turn my feelings of grief, grief over the body that had ultimately betrayed me and turn it into compassion, to being compassionate with myself, my co-workers, doctors, and even people who would see me in public and ask about why I walked funny. The simple fact is these people don’t understand, and meeting confusion or ignorance towards invisible conditions with anger only leads to more confusion and ignorance. 

I wanted to show strength and I wanted to be mindfully present for my children. I felt like they were getting the short end of the stick with a mom who at the time was extremely limited. I was struggling really hard with steroids, I wasn’t myself and my body was hating the steroids, but my day had come. I was approved for Enbrel and I had received my first month’s supply. I was elated. I took my injection and was hopeful. 

Later that evening I rolled over and felt that familiar agonizing pain set in. I was screaming, the screams left my body and I no longer felt human. After being scared and impatient I dragged my body through my house, down the stairs and into my car, put my car on cruise control and made a trip to the ER. Laying in bed, uncomfortable, desperate and scared, my mind kept racing back to that message — all I could think about was that word, “brave.”

For many of us with chronic conditions, the last thing we feel is brave. This is not about condemning others for trying to bring comfort to those who are struggling. When I think of someone who is brave I think of a police officer, a fireman, or any person who makes a choice and risks their overall well-being for others. I didn’t choose this, it chose me. These conditions are a lifetime, and they can rob you of what you thought you knew about yourself. I wish I felt brave, but the truth is some days living feels like a chore.

There is no hero’s parade, no medal given for surviving another day. 

There’s just time, time to reflect, time to attempt to heal, time to grieve, and time to hopefully forgive yourself enough to realize that you may not feel brave, but you are strong. 

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