Woman sitting, looking at mountain landscape

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.

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.

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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It’s weird, the things you think about while you’re sitting on the floor of your bathroom. Yes, I also understand it is strange for me to be sitting on the floor of my bathroom. More about that in a moment, I need to back this story up a bit…

Many months ago, I hadn’t been feeling well. I had this bizarre-o rash on my face, fatigue that would not be tamed and a general “not well” feeling. I landed in the heart hospital with horrific chest pain, three days hooked up to all kinds of beeping things. The diagnosis? Acid reflux. I knew it was malarkey, and I went to my follow-up appointment with a plan to argue the diagnosis. My fatigue was brushed off as part of my depression. Um, no. Well yes, I battle depression, and no, this wasn’t it. But what was it?

I begged for more lab work, anything for more answers. I was a pest with a purpose; I’d wear them down until they directed me to someone else. Which they did. One visit with a rheumatologist, and we set sail for an answer. I prayed for any answer! I ultimately got an answer: ankylosing spondylitis. Yeah, I hadn’t heard of it either. As I researched the autoimmune disease, the more it seemed to fit. As often happens in autoimmune disease patients, if you have one, you have multiple. I was also diagnosed with fibromyalgia. It all seems to make the other issues of my medical past connect. Vitamin B12 & D deficiency, chronic kidney disease. Sheesh, quite the laundry list.

Meanwhile, back on my bathroom floor…

As I sit here, I’ve been on three different medications over as many months. Insurance got to make the decisions as to what I must “try” before the current medication. So, here I sit, the day after my first dosage. Nausea, fatigue, the battle between wanting to wretch or take a nap. Typically, I’d be stressing about the dust bunnies behind the potty, thinking about how the walls need to be wiped down or how I really never liked this shower curtain. But today, as I sit here, I feel defective, coupled with the guilt of feeling this way. I’m not battling a life-ending disease today. I’m fighting against being disabled. But that’s exactly how I feel.

As I first mentioned, it’s weird the things you think about while you’re sitting on the floor of your bathroom. I’m thinking about my lack of ability vs. disability. In this moment, for now, I’m not really able to drive to the pharmacy to get the recommended vaccine (before starting the next phase of my treatment). It’s only a temporary setback.

Imagine driving around your supermarket/pharmacy and seeing a vehicle pull into the handicapped spot. You expect to see someone get out with a walker or the ramp lowering for their wheelchair. That’s being disabled, right? Well yeah, it is right. But it isn’t the only right; disability comes in many shapes and sizes. Sure, we’ve all judged the overweight person on a scooter. “If they weren’t overweight they wouldn’t need that thing,” right? Fess up! We’ve all thought it. When we see someone step out of a vehicle on their own volition, we also think, “They don’t look handicapped.” I’m as guilty as the next guy. And as I sit on my bathroom floor, it’s as if I’ve been dropped on my butt for my way of thinking.

We are so quick to be the judge and jury of someone else’s conditions. We minimize the needs of other’s to maximize our own. I am the first to acknowledge there are others who are struggling far worse than me. Yes, I am fortunate, I know that. However, by minimizing our weakness, we also minimize the level of understanding for those around us. I have to be truthful with what I’m struggling with so others understand.

My (our) truth is necessary so we may recognize the truth in others. My truth: there are going to be days I have to pull-in, lay down and honor my body. It is also my truth to share with others, so you know the truth. Yes, I’d love to attend your special event! The truth of the matter: I may not have the energy that day. I may be struggling with excruciating pain. I may be concerned about the fact I will have no immune system to fight against a simple bug. Please understand.

The next time you circle the parking lot at Target and spot someone pulling into a disabled parking spot, remember those of us with invisible illnesses. Those of us who “look fine,” even though we are not. The next time you see someone cruising the grocery store aisles in their scooter, ask if there is something you can reach for them. Reach out, reach up. Reach down… you may just have to help a gal off the bathroom floor!

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In my water exercise class, I am 10-20-30 years younger than the others. And most of them don’t use a cane or walking stick like I do. Getting out of the whirlpool a few weeks ago, I heard behind me, “What’s the matter with her?” The response: “Oh, she’s got a lot of problems, all in her back and more.” Then the first one again: “Mm-mm-mm, least I was old when I got my problems.”

Add to that most of them look at me and think I’m in my 30s when I’m actually a few months shy of 50.

I hate meeting new or newish people, those who don’t know I have ankylosing spondylitis and fibromyalgia, who haven’t seen the walking stick or my few blog posts, or who last heard I was tenure track and writing and and and and and. It’s not the first but the second or third, “Yes, but what do you do?” that makes me ready to go home. It’s too much to explain:

I hurt too badly to think the way working/non-chronically ill people do without effort.

I hurt too badly to even imagine thinking my way through the simplest problem or an interaction that goes on long enough for one of my pain centers, or three, to go off like fireworks.

I have to sit down. Now I have to stand up. Now I need to sit. Now I need to lie down. Where’s the bathroom? Are there stairs? How many? How long is the drive? When can I get back home to put on my pajamas and play mental games to feel like a human and not a raw nerve wrapped in deteriorating joints and inflamed tendons and muscle spasms that have, and will again, soon I’m sure, make me cry?

I have so little of the life I used to have, that I wanted, that I actually needed and worked so hard for. My degrees. My profession. My writing. My colleagues and friends.

Even I hate that. It’s not embarrassment. It’s disgust. But if I walked around fully and flamingly disgusted with myself all the time, I wouldn’t be walking around at all.

So what do I do?

I rest. Which doesn’t ease the fatigue but lets me get through a day without crying, screaming at people I love, or being too weak to move my arms.

I do laundry. All week. I can sort laundry or load the washer or load the dryer or empty the dryer or fold or put folded items away. If I do two of these things in the same day, I need a one-to-five-hour break in between.

I walk my dog. Infrequently and not very well or far and with a walking stick. And moderate to severe pain.

I make simple meals, one a day or every two to three days. In between I snack, eat takeout or just go hungry because I am too f*cking tired to cook and then chew the food.

I take vitamins, supplements, a DMARD and an injectable biologic. The last two aggravate my fatigue. That’s it so far. An antidepressant to sleep more than a couple hours and not spend my hours crying over pain, isolation, the well-meaning but skin-tearing questions, doubts, bad advice and me-too-isms of those who do not understand, or see any need to understand, chronic pain or illnesses.

I cling to my smartphone — Facebook, friends, family, email, texting, Amazon because it is easier to have the postal worker or delivery person carry it up the stairs to my door.

When I can, I read until I can no longer concentrate because of the pain itself and/or shifting positions every few minutes because of pain. I used to read 1,000+ pages a week. Now? Maybe 40. Seventy-five on a really good week.

Then I get up the next day and do it again.

That is what I “do.”


Dear future partner,

We haven’t met yet, or maybe we have and time wasn’t ready. We need to talk. Now. Before I fall in love with you, before you fall in love with me.

Because I don’t want my disease, ankylosing spondylitis, to cause you to leave me.

Too often I see sad posts in online support communities for severe disease groups. Like this one:

“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”

These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.

Hope. Hope that I’ll be one of the fortunate ones; that I’ll beat the odds and my marriage vows won’t turn into, “‘Til disability do we part.”

Fear. Fear that I will not find a partner to embrace me, disease included, for the rest of our lives. Fear that I’ll fall head over heels in love with someone who will look at me one day with eyes that can’t see past my disabilities, and give up on me.

Who will want me when I’ve been dumped? When my health will be worse and my market value has plummeted beyond repair?

Dear future partner,

I will push you away before I allow myself to trust that when you say “in sickness and in health,” you truly mean it. I am filled with self-doubt because I have no way to prove that you won’t leave me. Evidence shows that it is harder to maintain a relationship when one of us is sick with a lifelong disease or disability.

There is also evidence of miraculous love stories of two people overcoming impossible obstacles to be together. These stories deserve every praise that exists — but they are rare.

I want to be rare.

I am not like other people. I know I am amazing in a lot of ways, one being that I am a survivor. While I have no choice but to fight to survive (the essence of which defines my amazingness), it gives me the strength to believe that one day I will find someone who will fiercely and tenderly hold me from day one through infinity.

I’m fiercely independent. I’ve always taken pride in being self sufficient. I am stubborn to a fault. I’ve had to be — it’s a survival mechanism. You will tell me not to do things, but time and time again I will do them anyway, even when I agree with you that I shouldn’t. You will say, “I want to protect and preserve you so I have you for as long as possible.” Thank you for being selfish, in advance, because it could save my life one day — that is, if I listen to you.

But one of the most important things is for me to be selfish, too. While you are thinking I shouldn’t do this thing, I am thinking the reverse. What will life be in five, 10, 30 years if I look back and realize every decision was an effort to protect me from myself? I don’t want to simply survive, I want to live! What will carry me forward if I have taken no risks, if I haven’t pushed beyond the bubble of safety? Caged chickens deserve a glimpse outside their walls even if their legs are too weak to go far.

I’m sorry, partner, that after I do what I shouldn’t and I am in bed crying in pain, I will expect you to hold me. You won’t understand, but you’ll bite your tongue instead of saying, “Tsk, tsk, you should have listened to me.” You’ll let me cry until the neighbors think someone died. You’ll let my snot run all over your chest and you’ll tell me I am beautiful even if my eyes are so puffy I can’t see your face. You won’t understand, but love doesn’t require understanding to be unconditional.

I will need you more than you will be prepared to give. Our relationship will look different than our dreams. It may sometimes seem that you live alone, except then there’s me in the recliner while you wash dishes. You’ll feel more like a nurse or doctor sometimes, giving me shots, bathing me when I can’t do it myself, staying up all night when I’m afraid I will die if you’re not there to monitor me. I’ll often be sad or angry and you’ll have to figure out what to do to make me laugh again.

I will be needy. I won’t want to go to my doctor appointments alone. There will be nights I spend nine hours trying to fall asleep; you’ll wake up for work and I’ll be there looking at you, waiting to be held. When you come home you’ll find me crying on the kitchen floor because I dropped my favorite glass just trying to put it away.

Sex will involve more than making each other feel good. Our intimacy will include stretching my hips after intercourse and holding me when my back spasms. I can still feel really good, but we have to work harder at self-care and be more cautious than perhaps we’d like.

I will push myself to pursue activities with you even when they hurt me. I will encourage you to go for it, even when it is something I can’t do anymore and it hurts to watch from the sidelines. I will participate in your life to a fault and encourage you to go far, hoping that the freedom I give will substitute for the downfalls I can’t control. The reality is that a lot of my decisions will be navigated with a veil of hope covering my fear that you will leave me. I need you to understand this so you can stop me from pushing myself so hard, so you can tell me that you don’t need or want me to be anything more than I am.

All of this and more will overwhelm you. I will watch your poker face evolve over the years as you hide how hard it is to be in your shoes. I’ll see through it every time. I’ll know.

And I’ll wish I could take everything back: my needs, my desires, my sickness, and the fact that I am in love with you. I will feel I am ruining your life. I will feel I am burdening you with more than you can handle. Don’t let me. Please, tell me how much of a burden I am not. I will need your help reminding me that relationships aren’t about who gives more, but about why and how we give to each other.

Dear future partner,

The reason my disease is good for us is that it will force us to have a deeper relationship. We will have to communicate better to keep our relationship healthy — because of me. I’ll take credit for our need to be relationship perfectionists; I need to be able to take credit for something.

If you become my forever partner, it means I have no doubt whatsoever in your love for me. It means I can be all the parts of me with you all the time — the good, sad, goofy, angry, and painful parts — all of them. It means I have realized I am worthy of the fullness of life-giving love that makes a relationship whole.

Those of us who struggle the most know how much there is to lose, so we do a good job of holding on to what we have. We make the best partners, if only for that reason. When I allow myself to fall in love with you, I will be facing my biggest fear that you’ll get tired of taking care of me and realize you could have a better, more active, more fulfilling life without me. I only hope I am able to show you how much I love and appreciate you so you won’t forget how little I take you for granted.

Dearest future love of mine, don’t leave before we even begin. I have great things to offer despite this disease that tries to take my identity away, this disease that tries so hard to come between us. Help me defeat at least a small part of my handicap — my fear — by proving love can exist and survive beyond all that threatens to undo us. Find me, love me, be with me — until death parts us.

Follow this journey on Being Charis.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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