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Getting Through the Holidays While Balancing an Autoimmune Disease

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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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When I Don't Feel 'Brave' for Living With Health Issues

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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. 

mom and two young sons
Kinsey and her sons

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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An Epiphany About Disability, From the Bathroom Floor

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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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My Honest Answer to 'Yes, But What Do You Do?' After Becoming Ill

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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.”

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To My Future Partner, Who I Hope Won't Leave Me Because of My Disease

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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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Why the 'Dehumanizing' Process of Applying for Disability Benefits Won't Stop Me

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Applying for disability has been a demeaning, humiliating, invasive process for me.

I’ve heard it could take as little as three months to be awarded federal disability benefits, but I would probably have to be literally dying. I’ve heard it’s possible it could take three months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Many people trudge through two to five years of endless forms, initial decisions, appeals, reconsiderations and hearings before becoming card-carrying members of the unofficial federal disability club – if they’re successful.

In kind terms, the Social Security Administration (SSA) drags its feet more for those who are younger, more educated and healthier-looking. The SSA is less likely to award disability to those who have worked recently or, ironically, to those who have worked fewer years. Additionally, the lesser known or more abstract the disability as well as the more physical (as opposed to mental), the less willing the SSA is to acknowledge a disability. These are facts I have been told by staff at my attorney’s office, and all but one of them apply to my case.

Charis wearing a t-shirt with hand-stitched lettering that says "disability."
“I made this shirt.” Image by Rich Beckermeyer; Makeup by Alex Cassie
As if I hadn’t already made the most difficult decision of my life to accept my inability to work, applying for disability takes it one step further, forcing me to accept every single thing I can no longer do, even those I am not ready to accept. I still have dreams of being healthy, so please don’t take what’s left away from me too.

My reality has been muted by the towering, sound-proof piles of paperwork that sprout legs and chase me while I toss and turn at night. I have to prove to the Social Security Administration that I am unable to work, but also that I can no longer function independently. I have to prove I no longer have a life despite all I have done to maintain a semblance of living. I feel I am on the middle school debate team and I’ve been assigned the side I don’t agree with; in order to win I have to admit that I am incapable of the freedoms I embraced in the past. I have to do more than just admit them – I have to fully believe my inabilities enough to prove them true to strangers. I have to believe I’m less than I ever imagined I would be so others will believe me, too.

The piles of paperwork litter my kitchen table as I struggle to answer questions about my (in)ability to interact with people, go outside, take care of my health and accomplish chores.

I feel I am exaggerating when I say I cannot clean my home, even though as I write the answer I can see the piles of dirty dishes in my sink, smell the trash and feel the gritty bits of dirt and detritus gathering on my floor.

I feel I am exaggerating when I say I used to cook but can’t anymore, simply because I still want to cook. As I write the answer I look at the recycling bin full of receptacles for microwave meals. I open my fridge and see the empty drawers that were once overflowing with fresh vegetables to cook. I finally gave up on buying them; weeks would pass as they shriveled and I ate microwave-heated, sodium-rich soy gravy nuggets.

I still dream of from-scratch meals and crave the crunch of a perfectly cooked stem of fresh broccoli, yet I archive these thoughts as I tell the Social Security Administration I can no longer do these things.

Saying I can’t work is easy. I understand now that I can’t. It’s the other parts of the disability process I struggle with. Home life. My personal activities. Big Brother has his magnifying glass held aloft to observe every move I make – to see if, as a beautiful, healthy-appearing 29-year-old, I really do have trouble lowering myself to the toilet many mornings. To see if my friends really help wash my dishes. To see if I can ride my bike a mile across town and use the evidence to claim I have no physical problems. To see me interact for two minutes with a stranger without having a panic attack and use it to claim I have no mental trauma. To watch me sleep, to see if I have insomnia and nightmares. Come on over, Big Brother, the sheets won’t be clean.

I know I am disabled and cannot work, but I haven’t given up hope for the other parts of my life. I haven’t forgotten what it’s like to cry while cutting onions. I haven’t forgotten the warmth of the dishwater as I scrub away a meal that I made from scratch. I haven’t forgotten coming home to pleasant smells and a clean floor. I haven’t forgotten the joy of spending an evening out with friends, or a day trip to the ocean. I haven’t forgotten the freedom and power of running several miles. I haven’t forgotten, and that is what keeps me from accepting the losses I never imagined were possible.

I remember how whole I felt before, and now I am left with broken pieces – pieces I hold onto so dearly, like broken pottery.

I have learned, by looking at myself through the eyes of the Social Security Administration, that I am nothing more than my disease – yet I am simultaneously defined by everything I have lost.

Time and time again, I am painfully reminded that having a life outside my disability is simply unacceptable – if I am disabled, it must be my only identity. Every moment I must be available to stand naked in front of Big Brother’s magnifying glass for an invasive, full-body review before the conveyor belt jolts me to the next box to check on a government form.

If I need disability benefits, I had better be able to prove I am worthy of occupying the lowest rung of the ladder in a bureaucratic nation which, by the way, means I work harder than the rest just to keep from falling.

But I won’t give up. While this process is taking everything I have, I will not give up. Because people with disabilities don’t give up. We don’t have the option.

Follow this journey on Being Charis.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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