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What It's Like to Fight the Dermatomyositis 'Beast' Inside Me

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At only 41 years old, I never thought I’d be stuck in a body that feels “defective,” a body that doesn’t allow me most times to even walk my young daughter upstairs to tuck her in at night.

Thanks to dermatomyositis, this is now my reality. Dermatomyositis is a condition belonging to a group of acquired muscle diseases called inflammatory myopathies, which are disorders of muscle tissue or muscles. They are characterized by chronic muscle inflammation accompanied by muscle weakness. The cardinal symptom is a skin rash that precedes or accompanies progressive muscle weakness. There is no cure for dermatomyositis, but the symptoms can be treated.

Sometimes I scroll through my old Facebook memories and I can see it.

I can see how my disease has changed me.

I look at the smile on the girl in the pictures today and she looks hurt or broken inside. The girl in pictures years ago, she looks alive – happy and free, with so much energy!

The person my autoimmune disease makes me is someone I am not too familiar with. She’s cautious, reserved, quiet, always in pain and some might even call her “boring.” She can’t go a day without pain. She can’t go a day without something new popping up in her body. Most of all, she doesn’t go a day without being insecure. Insecurity is a terrible feeling and my disease makes it worse. I am embarrassed when I can’t walk, when my hair falls out, when I can’t do things by myself or when I have to sit down after doing something for five minutes.

I worry about my husband and who he now sees in front of him. I know I’m not the same girl he married. I worry about my family and how I let them down. I don’t want my illness to define me or take over my life, but sometimes I’m vulnerable and not the strongest version of myself.

I try so hard to not give into my illness, but I have come to a point where I cannot keep going at the rate I once did. My body is telling me I need to make this change. I don’t want to listen. I know I will have to find a balance and I will make it through this. I will have my tough moments, but I must not let them take over. I have to hope that my loved ones and those around me are understanding and know I am fighting one of the hardest battles I have ever come to know.

This autoimmune disease really feels like a cruel mystery. I go to sleep (at least try to) wondering if the pain will keep me awake. In the morning I awake worrying the pain will keep me bedridden all day. I can honestly say I have no idea what each day will bring.

I often ask myself, “How much pain am I going to be in today? How fatigued is my body? Will I accomplish anything today? Can I actually take a shower?” And the list goes on…

I live in a constant state of not letting this disease take over my life and fighting the beast inside of me. Living with any chronic illness changes your life. It’s something you are never prepared for and will most likely not see coming.

There are moments that I still feel an empty sorrow inside. Those times where I’m reminded of the truth, that I live with an incurable disease that will never go away. As time has passed, I can say one thing. I have learned to adapt. Do I fall? Yes. Do I flare? Most definitely. Do I honestly feel that much better? Not really. But mentally, I do. I feel like I am learning what works for me and what doesn’t.

I have to say, this disease is teaching me lessons. It’s truly put so much into prospective. I am learning about the people in my life. I feel wiser about my life; I appreciate life more than I ever did before. I see life as the delicate thing it is, and I love much deeper.

The two biggest life lessons this debilitating condition has taught me in a strange twist of fate, are to live each day as if it were my last, and for me, to grow my faith in God. This has had a tremendous impact on helping me cope with this disease.

I am not here to promise you that it’s going to get better. But I will promise you that you will become stronger.

We still have a purpose, and we are still very much worthy.

We will probably fall, and we will get back up.

Yes, this is extremely difficult, but we must remember that we are not just chronically ill, we are more.

We are Warriors.

Originally published: October 1, 2019
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