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I'm Coming Clean About My Chronic Illness Struggle: I am Not OK

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I have fibromyalgia, Hashimoto’s thyroiditis, spondylosis and endometriosis. I have changed my lifestyle, the way I eat, sleep, socialize and so forth, so I can make the most of each day and use my “spoons” as efficiently as possible. My first diagnosis came in 2014 and they’ve been coming about one more each year since then — an array of women’s health and autoimmune problems. If you looked at me, you’d never guess. You see my smile, my boisterous laugh, my interactions with my colleagues and clients, and you think I’m great. Maybe even athletic because I have a naturally muscular build.

The thing is, I’m finally at the point where I can just accept, admit and say out loud: I’m not OK.

I’m struggling. I love my job, but it is stressful. It’s pretty fast-paced and no two days are ever alike. I have a lot of responsibility I take very seriously. I started a food pantry at my church, and I work with the youth group. I love doing it. It’s usually good for me, but it feels sometimes like just another thing I’m not doing right. I’m working hard to build routine and processes into my entire life — how I manage my nutrition, sleep, social life and so forth. But the truth is:

I’m overwhelmed.

I’m tired.

I’m in pain.

I have anxiety I just can’t manage.

I miss “me”.

I can’t keep up.

I am not OK.

Regardless of all the changes I’ve made, the medications I take, the alternative therapies I’ve tried, the second, third, fourth, fifth doctor’s opinions, I am forever changed. And I can’t see how it’s in any way positive.

I’m struggling to accept myself and my limitations. I don’t really know what those limitations are, because they change seemingly daily. I want so very badly to be in a daily routine, I can’t even explain how badly I need a routine for the sake of my mental health, but I can’t manage to get myself into anything consistent because of pain and energy levels that change daily.

This is grief. I am grieving the version of myself I used to be. In the last several years, I’ve changed medications, diets — anything you can think of — all in the hope I’d find some semblance of the life I had in mind for myself. But that hope has to change into a hope I can still love myself and be at peace with this version of me. I’ve been trying to be the old me, with not enough respect for the new me. So, I’m finally at acceptance — not peace, not yet — with the knowledge I’m a new me. But with this acceptance comes anxiety. What can I do? What can I not do? How do I establish routines for myself? What am I going to do wrong? What am I going to fail at? When is everyone going to realize I can’t keep up? When am I going to make a tremendous mistake that ends my career?

I am not mad at myself, nor do I pity myself. I’m depressed and anxious, and just getting by. It’s hard. I don’t know what else to do right now. Just cope and keep on keepin’ on until I am OK.

I tell everyone I’m fine, and if I’m not fine today, I’ll be fine tomorrow.

But the truth is, I am not OK.

Can you relate? Let Margaret know in the comments below.

Unsplash image by Tiago Bandeira

Originally published: February 12, 2020
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