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A week after starting an exciting new job, I fell sick with the flu. Less than five months later, I would find myself being fired for excessive absence.

I couldn’t believe I’d be offered the job. I got hired the same day, only a few hours after my interview. I’d officially deferred from university in the beginning of September and had been jobless for the first month and a half of the new academic year. The depression was suffocating. I struggled to lose the weight I gained during my stressful year of study. I spent my time feeling sorry for myself, hating myself, thinking I’d made a big mistake. This job was about to change things. I was about to do something valuable with my time.

Less than a week into my new position, I fell ill with a bad case of the flu. I’m asthmatic – I blamed myself for not getting my vaccination that autumn. I turned to social media to make my distress known. I spoke of my severe body aches, migraines, and fever. I talked about my inability to leave my bed or eat the food my mother prepared for me. I talked about wanting to sleep but being unable to due to the coughs that consumed me every time I would lay down. I talked about how I couldn’t walk but instead crawled to the bathroom, thinking I was dying.

After a week or so I found myself improving, eating in small amounts and feeling myself again. This, however, was only the beginning.

I found symptoms coming and going; severe nausea and flu-like symptoms. I thought to myself, “There’s no way I’m getting the flu again am I? I just had it!” Then, three days before Christmas, on my way to a family member’s birthday dinner with my mother, I was hit with sudden pain. Pain that took me off my feet and caused me to collapse. Pain that started in my right knee and, by the end of the night, had spread to every joint in my body. Every. Single. One. It was reminiscent of previous bouts of pain I’d pushed to the back of my mind; occurrences I had assumed were isolated. I remembered staying home from sixth form because I couldn’t walk. I remembered the anxiety of missing classes and falling behind. I remembered the severity of that pain. This was when I realized things were worse than I’d previously thought.

Over the next few months, I bounced from referral to referral, playing the waiting game, as suspicions of conditions arose from my GP. I waited, patiently. I pushed the pain to the back of my mind as I left the house at 7:15 a.m. each morning. I pushed the pain to the back of my mind as I worked my 10-hour shift, returning home at 8:30 p.m. with just enough time to eat a late dinner and wind down before going to bed. I became more and more ill, having more flare days, calling in sick more and more often as time passed. But damn, did I try.

A few weeks into my harrowing work routine, I had my most severe flare up yet. I called in sick, imagining that I would improve within a few days. Two weeks of staying home from work and the depression was kicking in again. I was lucky I didn’t live alone, but this was easily the loneliest I’d ever felt. Most of my friends were at university, having daily adventures and making friends. I drearily tapped through Snapchat updates from my colleagues, socializing and joking in the break room. I wondered if they’d noticed I wasn’t there. I travelled back in time to the periods of loneliness I’d felt months prior and it felt all too familiar. Another two weeks later; four weeks since I stopped coming into work; I got my doctor’s note. At 11:30 a.m., I was prescribed fluoxetine. At 3:30 p.m., I was dismissed from my job.

My measured collection soon cracked and crumbled into a full blown anxiety attack in front of my manager, complete with depersonalization and total loss of sight. I felt my being fall out of my body and my vision turn black. I blindly fumbled for my inhaler and took a dose. And another. And another. I was a breathless pile of tears and saliva and mucus. I was ashamed of the sounds coming out of me but I had no control over them. “How did this happen?” I asked myself. “How did the girl who only had two days off throughout her whole time in primary school become the person fired for being unreliable?” This really put things into perspective, making me realize just how serious my health issues had become. This, to me, was total loss of control. I didn’t say anything after that. The girl who always had something to say suddenly became speechless.

I felt cheated, I felt wronged, and I felt as though life was unfair, but I didn’t appeal my dismissal. This is why.

Staying at my job was punishing myself with something I thought was my duty. I thought it was my duty to work through my sickness and pain. I thought it was my duty to say “Yep, I’m fine!” with a half smile when people asked how I was. I thought it was my duty to stay at my job and downplay just how ill I was. I stayed at my job for over a month longer than I should have, working through pain I should not have been working through, only taking days off when it was physically impossible to go in. I pushed myself to an unjustifiable limit until I couldn’t come in for a month straight. I pushed myself until the thought of working made me sick. I pushed myself until a five-minute walk from my house to the local shops was too much. I put off looking after myself for so long that I was unable to look after myself. The stress of my dismissal alone struck my body with severe fatigue and pain, leaving me unable to walk and, for the rest of the day, eat. That in itself tells you enough.

My management did me a favor. They didn’t mean to do that when they did, but they did. They did what I should have done for myself a month earlier. I should have put my health first but I didn’t, and I’m grateful they forced me to. Maybe I’ll get a handle on my condition and will be able to manage it – I hope, pray, and believe I will – but as it stands, I’m not in a place to keep up such level of work. If losing my job was the shock I needed to realize I was neglecting my health, then perhaps it was a good thing.

I always say I turn negative experiences into positive action. Though this isn’t the life I pictured for myself at 19, I spend every day preparing myself for what may happen next, and turning negative experiences into positive actions, as difficult as it can be. Positivity is productive but denial is not.

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I recently switched to a different form of health insurance and all the medicine that I have been on for years has to get pre-approval before they let me continue taking it. They decide this mostly based on how expensive the meds are. Recently I ran out of Lyrica, which is one medicine that I never want anyone to mess with because it helps me so much. I had to go through horrible withdrawal symptoms including headaches, intense night sweats and a low grade fever for a few days while I waited for them to decide whether or not I can keep taking my much-needed medicine.

Finally, when they came to a decision they said I need to try something else and that I can no longer take Lyrica, which I have taking for more than five years. I burst into tears when I was told this. Lyrica means I can function without too much pain, it means I can get off the couch and do things, it means I can be productive. I was devastated by this news. I can’t go back to how I was before I started taking it.

It isn’t that I am not willing to try a new medicine, it is that I am terrified that it might not work when I know for a fact that Lyrica does work for me. I am tired of having to constantly jump through hoops just so I can feel a tiny bit better. I am tired of having to be told that I have to stop taking or doing something that is genuinely helping me. That is a very cruel move.
It is beyond frustrating when things like this happen. It feels like I am locked in a cell, looking at the key to freedom, but never able to reach it because someone keeps moving it further and further away, making sure that it is still in my line of sight just to taunt me.

I wish people who make these decisions could live for one day in the shoes of someone with a painful, chronic illness so they could understand just how devastating these forceful changes are. Why fix what’s not broken? Why make me go through the hassle of changing medicines, a situation that could be very hard and perhaps painful for me?

I am hoping this works out for the best, but I have been down roads like this many times before. I know hope does not guarantee that this is actually going to help. Behind the hope is a grim realization that this might not work for me and I will be forced to jump through many more hoops only for that little bit of much needed relief. It is cruel to take away something that is actually helping someone. Maybe this will work out for the best, only time will tell.

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Sundays are probably my favorite day of the week. I grew up in a Christian home so Sunday means church which as a kid meant I got donuts and a coloring page! Awesome, right?

Five years ago when I was diagnosed with gastroparesis there were a lot of unknowns arising around us. This happened shortly after being diagnosed with bipolar disorder. I hadn’t even had time to process that, but then I was told I was dying of malnutrition? I felt so alone and helpless. Let’s add “hopeless” to that while we’re at it. Nothing would ever be simple again, and I knew it. A lot of prayer and crying and begging for God to fix this and make it all go away has happened over the years. If I prayed enough he would heal me. He heals others. Right?

Fast forward to today. My other half and I have been looking for a new church to call home. So we tried a new church. This church we went to had a pastor who did a message on “Why are you so afraid?” He shared some scripture but mostly of this story of how all of the sudden his wife fell ill. They spent 10 days in the hospital and things were looking grave, but the church rallied together and prayed for them and the doctors and nurses could feel this energy coming from her hospital room and they knew something was different. I am sure I can spare you the rest. Most of us have heard these stories: fall deathly ill, the world prays about you and for you to heal, and bam! It’s a miracle! You’re going to live because you prayed just right and God has healed you! You did everything just right because the answer is always Jesus.

Now I am sitting in this chair (because churches rarely use pews anymore) and I am hearing this wonderful story. (I am happy she is doing better, by the way.) Here I sit, thinking, Where did I go wrong? I have asked that question so many times I have lost count. I have asked many more that make me spiral into this deep depression and self-loathing thing that I don’t think I can pull myself back from. You may ask me, “How can you have faith, Abbey? How can you still be a Christian when everything you hear is prayer heals and you’re still sick?” I have the answer for you, and it is not Jesus.

I need that faith. That faith is how I pull myself back from all the darkness and negativity from within myself. I choose to believe there is a God out there who loves me so deeply that He chooses to heal me in a way I have not understood until today. The way I think about my situation, my heart, my soul, and the way I see things are all examples of how He has healed me. Is it perfect? No. He is still working on me. Always will be. That’s not how I originally would have defined healing? Would you?

I still have gastroparesis. I still deal with bipolar disorder, anxiety, IBS, and whatever else my body decides to throw my way. I am always tired, and it’s a tired that is beyond what a quick stop to Starbucks can fix.

So none of this is well with my soul. My soul aches, and I am mad and frustrated and want so badly to find this bigger purpose for why I go through what I go through. What is in fact well with my soul is through church I met my person (if you have watched “Grey’s Anatomy” you get it), and my person has been amazing support, alongside my parents. So yeah, there are things I truly believe God has led me through to get to where I am. I will continue to try churches and have faith because at the end of the day that is everything to me.

It seems that all of my days feel like I can’t stop the endless fall like Alice in Wonderland. Except I don’t get to land anywhere. I am never quite sure what to do to pull myself out and up.

Follow this journey on Spoonie Meets World.

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Recently I’ve started seeing posts telling other people with chronic illnesses to stop “complaining” on social media. I dislike these posts because social media is the only place where I feel like I can complain.

When I first made my chronic illness social media account, it was so I could have an outlet to talk about how I have zero spoons and spent the entire night with painsomnia.

I think telling other people that they can’t “complain” about how awful they feel is ableism. To me, telling other people that they can’t talk about how awful they feel because other people are sicker is like telling them their pain doesn’t matter.

I use social media to talk about my doctors, my friends who don’t understand, and my symptoms that just won’t go away.

Just because I am not on chemo or in a hospital doesn’t mean that my feelings are invalid or unimportant. I need an outlet to be truthful with people who just may understand how I feel.

I think there is no point in a chronic illness community if you can’t be honest and share your thoughts, which is exactly why I do it.

Keep “complaining,” you guys, because if nothing else: I care.

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I’m a talker; I believe that words are powerful. A person can be placed on the highest pedestal or reduced to nothing by just a few words.

During the course of my hardships and illnesses, I have learned that the only thing as powerful as words is silence.

Sometimes, words can’t match the healing power of silence; sometimes, words are too much, and not nearly enough.

Nine years ago, I had three miscarriages in less than a year. The first startled me, the second shook me, and the third shattered me. I felt like any minute I would drop dead from the grief. I didn’t realize the pain could possibly be worse until I learned that each precious baby had smothered in my body due to a previously undetected clotting disorder.

After each loss, there were many calls, visits and even cards. There were so many words of encouragement. I appreciate every person and every kind word, but at the time, it all seemed so empty. So often, it felt as if people were rehearsing a script that was designed to bring them comfort. I knew I was loved, but there was no magic phrase to bring my children back.

A few days after the final miscarriage (which ended my attempts to have any more children), I called my friend Steph. Steph lived nearly an hour away, and had gone through similar a year prior. The best I could do was give a brief account of the miscarriage, then I just cried. I felt so bad for completely losing it as she sat there. I ended the call, sat on my couch and sobbed. No one was home. No one could see me. I opened up the floodgates.

About an hour later, my front door opened, and there stood Steph. Quietly, she sat down next to me, wrapped her arms around me, and cried. Not a word was spoken. Nothing. We cried for my babies and her babies and all of the children that had left a hole in the heart of an excited and expectant mother. I don’t know how long we sat there; it was a long time. Finally, Steph got up and left. Not one word passed between us.

In that silence, I heard ” I understand.” “I love you.” “I hate this.” “You will be OK.”

Just over a year ago, I asked my friend Shaun to sit with me through yet another complicated, painful, horrible infusion. After five hours, the infusion was complete, and I was miserable. I was nauseated, my whole body hurt, and I was angry that at 43 years old I was damned to a life filled with these treatments. As Shaun drove me home, I began to cry. I tried to stop, but I couldn’t. Wordlessly, my friend reached over and gently took my hand in his; he didn’t let go until we reached my house. In those quiet moments, Shaun’s actions said to me “I’m here.” “I’m so sorry you have to go through this.” “It will get better.”

There were no words that could make it any better, and my friend instinctively knew that.

So often, our pain doesn’t require appeasing or distraction; it requires reverence; an almost sacred regard for our suffering.This is the exact opposite of what most of us have been told throughout or lives. I grew up hearing “Just one kind word can go a long way” and other similar beliefs. Those things are often true, but not always.

Sometimes, there are no helpful words. Sometimes, silence is all there is. And that’s OK.

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We are the warriors. The ones who pour over our medical histories the way other people pour over gossip magazines. Pointing to salacious details, judging each and every thing we see before us.

We are the warriors. Who know more about our conditions and illnesses and bodies than most doctors do. We’ve turned to medical research journals and the internet to learn as much as we can because we often have no other choice. We become experts because we have to.

We are the warriors. We may not always look sick to others, but we are. We fight each and every day against a society that often won’t label us as sick because there isn’t a visible identifier for our illnesses.

We are the warriors. We have probably had to grieve countless activities or foods or hobbies because of our struggles. We will still lose more along the way. We will have to grieve those, too.

We are the warriors. Some of us have had to give up our dream careers because they just aren’t as feasible.  Maybe we have had to change our expectations about what working with our disabilities will look like. We fight for accommodations and against workplace discrimination. Maybe we have lost the ability to work a full-time job altogether.

We are the warriors. We have lost friends or family or both because they just didn’t understand. Maybe they didn’t believe us. Maybe they didn’t want to or even try. Maybe they were mean. We had to grieve them, too.

We are the warriors. We are the ones who fight each day to accomplish the little things sometimes. Fight because sometimes sitting or tying our shoes or making the bed seem like insurmountable tasks that cause so much pain.

We are the warriors. We are called lazy or fakers or liars; sensitive or selfish or drama queens. These words hurt. Unfortunately they often become so common we become good at dealing with it. It hurts, but we learn to handle it to survive.

We are the warriors. We band together and raise one another up and support each other because we have a strong bond. A bond formed due to unfortunate shared circumstances. A bond that can form friendships and relationships in an instant. There’s no replacement for someone who “just gets it” — even if it’s hard to know because they’ve been in the same pain you’ve been in.

We are the warriors. The warriors who don’t give up. Don’t give up despite the fact that it is easier to give in, despite that not fighting for a diagnosis, or treatment, or truth is so much easier. We keep fighting. We keep advocating.

We are the warriors. We are stronger than they think. We are stronger than we think.

We are the invisible disability warriors – bold, brave, and powerful.

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