Autoimmune Disease

“Hi, How are you?”

I have four chronic diagnosed diseases. Chronic, for those who are unaware, means long term and continuous. I will probably live with these diseases for the rest of my life. They do not go away. At times, I may feel a slight break in my symptoms, but most of the time, I’m having to fight my way through the day, fight my way against my body to appear normal, to get out of my house, fight my way against gravity to stand upright. You have no idea the energy that takes for some who have a chronic illness, just to appear normal. Most of the time, I’m managing symptoms with pills around the clock. And that’s my life.

It’s so difficult for me

when you ask me how I’m am/doing/feeling.

[Is this the proper time to let the truth out? Should I answer honestly?]

“I’m fine.” seems to be the automatic response. “I’m fine” to the general population means, I’m doing well, doing good, happy, not ill.

I’m fine for someone with chronic illness means sick. “I’m sick,

I’m having a rough day, I’m in a lot of pain. But I’m managing it.”

 

So you’re speaking to your family. And maybe they ask, or maybe you wanted to inform them of your symptoms being difficult to manage again.

“I’m starting to feel a flare up.”

[Response: sad face]

Because any well person is tired of hearing how sick I am. Any well person understands and is sympathetic for a couple days. . .

Days 1-5:

“How are you feeling? Is there anything you need? I’m so sorry, hang in there. Love you”.

There is always a cut off day for sympathy. And maybe its because you only see me when I’m out of my house, appearing normal. When I’ve put on my best and have on a pasted smile.

Maybe it’s because you feel like eventually, I’ll feel better. Like having a cold, or the flu, or mononucleosis, or a stomach bug, it’ll pass.

But chronic illness won’t pass. I will always be managing the symptoms. And maybe on some days, my symptoms will be easier to manage than others, but my symptoms, my pain, my depression and anxiety from being in constant pain will always be around and will always be something I’m dealing with.

I’m sorry you feel annoyed of  hearing that I don’t feel well. And I’m sorry if I let you down, because you were hoping to hear “I’m doing good, thanks for asking!” when you ask me how I am.

It’s so difficult not to feel empty when you have no one to talk to about your illnesses. When you have a chronic disease (multiple in my case), they fill up your day. And it’s hard not to think about them. All you do all day is fight your symptoms, fight your pain away, fight your fatigue away, sleep away the depression until maybe you see some sun. To anyone you could call on the phone, your symptoms and struggles are so one tracked. It’s on repeat for them. But for me, it starts over every day. It can’t get old for me, because it’s the life I live new day to new day and I’m not given the chance for it to get old, because I can’t stop fighting the pain, the nausea, the fatigue, the dryness, the aches… it can’t get old to me. I have no one to talk to about these things. They’re tired of hearing them.

It’s hard not to feel alone in a world who has written you off because you can’t answer their robotic “I’m great, how are you!” honestly.

But I smile.

And even then, there’s one person who can see what’s hidden inside my eyes – beyond my smile pasted on my face.

My husband is an angel.

I don’t want to think of life without him. I knew my husband, Brady, before we knew that I was sick. We had so much fun on every day we spent together. We got married, and we noticed something wasn’t quite right with me. I couldn’t do things like normal. It took more effort for me than it took for others. I was constantly sick. Brady was the one who pushed me to get answers. And with these answers, we found treatment.

Some days I still get into a funk. My memory during a flare flies away from me, like an flag that’s been let loose in the winds. I feel alone. I feel depressed. I feel anxious.

 

Brady is a nurse at one of our local hospitals.So if that doesn’t tell you about him, he has the most caring and gentle heart in the world. He wants so much to help people, and I truly believe that’s what he’s been put here on this earth to do. I’m so thankful that in the mess of the world, we had a run in. I’m so thankful that I found this kind, gentle, caring, spirit to be my life partner.

Last night I slumped. I slumped down hard. I felt exposed. I felt unprotected. I felt vulnerable. The pain, the sadness, the emptiness, it broke me. I needed someone to build me back up again. I needed someone to reinforce my walls so that we, as a couple, can battle these chronic diseases together. Both husband and wife have to be equipped at all times. Brady did that for me. That wasn’t the first time he’s had to. It’s called marriage, but more than that, it’s called soul mates.

I met Brady when I was 17 years old. Before any of my autoimmune diseases struck terror into our lives. He stuck with me. My life falls apart often. The stress of constant pain on your body can do more to you than you could ever imagine. Each time he simply sweeps up the pieces and puts me back together. “It’s ok! Don’t be sorry!” He holds me together daily. He gives me strength daily. I don’t know of another man of who could do the things that Brady does, and love his life as he says.

“When life feels like it’s falling apart,

You come and swoop me up.” Swoop Me Up by Onyay Pheori

Brady’s never asks “how are you” without expecting the truth as a response. When he asks, he genuinely wants to know how I am. And I do the same for him. Because every day is different, but somehow the same with the chronic illness encircling our marriage.

He’s never become unsympathetic, he’s always in fact been quite empathetic, no matter the years that continue with these diseases. . . and for years to come.

We have a constant and literal pain in our lives. Brady and I are fighting it together. I couldn’t do it without him, that’s for sure.

Brady, you’re my superman.

Thank you for all that you do, when you don’t even realize.

;Bailey

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