asbailey04

@asbailey04
I want to share my story, encourage others, and be encouraged
Community Voices

Fighting the Good Fight: My Chronic Illness Story & my Faith

Some things I’ve had a hard time coming to terms with. What do you mean I’m stuck with this? How am I supposed to live with it? Why don’t my peers believe me?

Chronic pain is real and it sucks. I remember the exact moment my life changed. I’ve seen it as a change for the worst, as most people see it as having worsened my life. Heck, how could you not ; it’s made me miserable. But at the same time, if it’s God’s plan, how could it?

July 21, 2017 after a hot summer day at the pool, I came home early as I’d been feeling nauseated all week. I was watching a movie, The Longest Ride, to be exact, with my dad while enjoying a root beer float when all of a sudden, an immense pain shoots through my lower right quadrant. I had no clue that pain would change my life. It never occurred to me that one day I’d wake up sick and never get better. We figured it would go away but it never resided. My mom was obviously concerned about appendicitis, so I went to urgent care the next morning. I was told it was either appendicitis or a bad ovarian cyst. I was sent to the hospital for an ultrasound only for it to find nothing. This was the very beginning of an endless cycle of tests, doctors, and doubt.

I was sent to a surgeon who would eventually take my appendix out for no reason other than to rule it out and do an exploratory laparoscopy, which would be inconclusive, of course. I’d have an endoscopy and a colonoscopy. More ultrasounds only finding a liver hemangioma which is no big deal.

Doctors quit believing me. That hurt. How could you not tell that I’m in real pain. I couldn’t even eat. They began to say I was just anorexic and depressed, my mom began to believe them. I lost my friends. Yet I continued to persevere through the hurt.

I was at a crossroads spiritually: torn between being mad at God and begging him to help me. I did a mix of both. I’d pray and pray and pray with no results and then I’d become angry. How could a God so just allow me to suffer like this.

I’d never experienced more pain in my life. My head throbbed, my stomach felt as if it was being stabbed, my chest wouldn’t stop thumping, my heart rate accelerated, my stomach empty as I could not eat, nausea, dizziness. The perfect storm of agony.

Why me? All I’ve ever been is faithful. Why not some awful person who probably deserves this? But then I’d think, this pain is unimaginable, I’d wish it upon no one. Why me? But why not me?

Having this disease, you wonder if God is somehow punishing you. He’s not. It’s important to know that your pain has a purpose. I truly believe that God chose me to have this so that I could bless others in some way; to share my testimony and help others. God gives us these obstacles so that we come out stronger, with better faith. You have to see it this way: if we’d never been diagnosed with a Chronic illness, we may not have come to understand our desperate need for the presence of Christ in our lives.

The night before the meds started to help, I was done. I was in excruciating pain, hysterically crying. I was praying per usual, but this was different. I was shouting for God to heal me. I said,”Lord, I can’t take this. Have mercy. Please Lord, I know this is your will, but I’m hurting. Heal me. Help me. I need You. I can’t do this without you. Heal me.” That went on for quite a while and then I went to bed. When I woke up in the morning I cried tears of joy. God truly is Good. I know this because I was relieved of some of my pain. It wasn’t perfect; it never is, but I was doing better. We serve an amazing God.

I have gotten even better since then. I’m learning tools to help me. I want to thank my pediatric cardiologist Dr. Raunikar, my pediatric pain management specialist Dr. Windsor, my pediatrician Dr. Donna, and my pediatric physical therapist Sarah Pates for giving me these tools. They’re the few doctors that listened. But more than that, I give God all the glory because he is the one who put all of this in place.

Let’s get one thing straight: just because I’m doing better doesn’t mean I’m cured. This illness isn’t curable, just treatable. People have many misconceptions about this. They think I’m always better or that I’m better than I am. I’m always in some kind of pain every single day. It’s just that sometimes it’s better than others. It comes in waves. It’s like high tide and low tide.

A verse that comes to mind when thinking about my illness and that I try to live by is Pslams 73:26, which reads,”My flesh and my heart may fail; but God is the strength of my heart and my portion forever.”

People often wonder how I’m fine one day and not another. The thing is, I’m not fine one day. Not in their terms, at least. One day my pain and symptoms are manageable or functional and other days they aren’t. Pain varies. And sometimes just my tolerance varies. I do things at pain levels that others wouldn’t even consider moving at because if I don’t, I won’t have a life. That doesn’t always mean I’m having a good day. It means that I just managed to be stronger than it for part of the day. When I say “I’m fine” what I really mean is that today I have severe symptoms but they’re manageable. I am not having a flare currently but I’m still suffering. My head feels like I’m above water today but I’m still drowning. Please don’t confuse my definition of “fine” with yours. When a chronically ill person says that they’re tired and you say “ yeah me too I only got 4 hours of sleep last night” please understand that you’re not talking about the same kind of tiredness. I don’t think people understand how stressful it is to explain how sick you feel when you don’t always look sick on the outside. It’s awful and people won’t always believe and it sucks but life goes on.

Speaking of people not believing me, that’s been a part of this that’s been really tough. I’ve lost a lot of friends over it. I used to be sort of “popular” and now am not, but at least I know who my real friends are. Rumors have been spread about me faking it for attention. Having invisible, Chronic illness is hard enough, being doubted, judged, or dismissed is overwhelmingly heartbreaking. One of my best friends believed this rumour, but through an article she read about Tori Foles, NFL player Nick Foles’ wife(I encourage you all to read it), she apologized. It was like a slap in the face because I thought it had been my fault that we were growing distant, when in reality she thought I was lying and I had no clue until she asked for my forgiveness. It was tough, but I did. It’s the right thing to do. It’s what Jesus wants. I of course prayed about it and we are still best friends. She had courage to admit she was wrong and felt genuinely sorry about it. I do wish people wouldn’t assume anything about Chronic illness until they’ve experienced it. I encourage you all to not judge Chronic illness sufferers. You have no idea what strength it takes to wake up each and every day to battle your own body.

To the people that stick by me through it all: thank you. The kindness and support you have shown me means the world to me. This fight is a tough one but by showing you care you have taken part of a very heavy burden off of my shoulders.

To be honest, some days I just don’t have the energy to hide that I am devastated by this illness. It’s ok. It’s good to feel that way. It’s completely normal. Its ok to grieve for the person you once were. I know I have. She died and was replaced with one that can barely function at times. It’s heartbreaking and frustrating but God gets me through it. Most days I do accept the reality of living with my illness, I accept and adapt to my limitations. Some days I grieve for the person I should be. I wonder what she would be like now. Some days I want to give up, but I don’t because thanks to Jesus, most days I’m stronger than that. Wondering who I would’ve been without this illness, though, is one of the most emotionally trying things to come to terms with. I was walking a specific path when I got 150% rerouted. It feels like I’m in this bizarre, alrernate, half-baked version of my real life. As much as I desperately want to get back on the track I was before, even more, I want to know where that path would have led. Who would I have been? What could I have been? We always wonder what we’ll be like when we grow up and I feel like I was robbed of ever finding out. I am constantly torn between “i can’t let this illness ruin my life” and “I have to listen to my body and rest.” I miss my life before I got this illness. I miss being able to actually enjoy things without feeling worse afterwards. I miss being able to do things without being scared of it’s consequences. Though I miss all of that, this is the path God chose for me and I’ve come to accept and embrace that.

To my fellow spoonies(Chronic illness sufferers): i know you feel as if you’ve been set up to fail. I want you to know that not being able to do as much as others does not make you a failure. It makes you an incredibly strong individual who is trying their best. Never let anyone tell you otherwise. You are going to find out two things: how strong you are and who really cares about you. You will lose people, but it’ll be alright, if they can’t be there for you at your worst, then you didn’t really need them anyways. Forgive. I know it’s hard when people are being ignorant towards your condition, but it’s freeing and is God’s will. A quote that has helped me a lot is,” it has been a beautiful fight. Still is.” To me it means that God had put you through this for a reason and it’s difficult but you’re a fighter and you’ll get through it. You are stronger than you know. There’s strong and there’s Chronic illness strong. Together, let’s stand up to POTS(get the pun?). Keep on fighting.

Chronic illness has taught me so much, but one of the lessons I’m holding close lately is that healing is never as immediate as we hope. It takes time. It’s unpredictable, up and down, all around, backwards, forward, and inside out. But it comes in time. It’s a process. But you will heal in time. Second Kings 20:5 says “ I have heard your prayers and seen your tears; I will heal you.” Hold closely to that.

God has purpose for us all. Why mine is seemingly more painful that that of others is for him to know and me to discover, but I know in my heart of hearts that I’m here doing his will because of this illness. All it’s taken is a little change in perspective to see that this could be a blessing in disguise. If I can bless one person, it’s worth all the pain. That’s the mindset we all need to have. I thank the Lord for all he’s given me and for the opportunity to share my story. Shout out to all of you like me, fighting a battle that most people don’t understand. Keep fighting the good fight my loves.

POTS

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