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How Acknowledging the Good and Bad Helps Me Cope With Lupus

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Have you ever been told, “Focus on the positive, eliminate the negative?” Do you have a problem following through on that advice?

That saying is almost like trying to ignore a tree that fell through your roof and now it’s raining. It’s also freezing outside, and outside is now inside your house. How are you to ignore the hole in your roof, the tree blocking your way, the rain on your floor and the freezing temperatures, while somehow making it go away by focusing on the fact that at least the tree didn’t land in the master bedroom?

This is how I often felt when people told me to focus on the positive when I expressed being in pain after my fibromyalgia diagnosis, or the years of suffering leading up to it. I believed I had to acknowledge my suffering as well as the happy parts of my life in order to be productive.

After all, how are you supposed to get out of the freezing rain and turn your house warm and cozy again if you cannot admit that a tree fell through your roof? No one wants a hole in their roof caused by a fallen tree, but if it is ignored, it cannot be helped.

Growing up, I often felt deep emotions — soaring happiness, rapid excitement, hollow darkness and deep sadness. I had the entire spectrum of feeling. Usually, no matter the situation, I had complex emotions that confused me. At my grandfather’s funeral, I attempted to help serve food, set up tables and had no idea I was supposed to sit with my grandmother. Her sisters were there, and as she never saw them, I thought they would be a bigger comfort to her than me, as I felt I hardly knew my grandmother. As someone who frequently helps at funerals, I had only rarely been part of the grieving family to be supported. I did not cry when my grandfather died, even though I missed him and loved him. The night before his funeral, I saw a silvery image of him come to hug me as I tried to fall asleep. My grieving process is still going on, and he died five years ago when I graduated from college. After the initial numbness passed, I was greeted by regret, anger and questioning.

This is just an example of how I experience emotions.

Another is disaster planning. I have a bad habit of looking at a situation, seeing what could go wrong and planning for the worst proactively. It’s not an entirely bad trait. But sometimes I will be excited about an idea, will have already run my disaster planning algorithm through it, only for my mother to shoot it down with extremely shallow disaster planning telling me I don’t think through things and proceeding to forbid or simply kill my vibe. I think the fact that I am expressive leads my parents to believe I cannot be rational, so when I am excited, I must have a bad idea.

The truth is, we all have emotions. Some people simply wear masks, like my parents. I am a bit too honest for facades and my feelings give me intuition I operate out of. They also give me a holistic approach to situations. Growing up and today, disaster planning while feeling a positive emotion and not experiencing a total eclipse of the heart when tragedy happened prepared me (somewhat) for my fibromyalgia diagnosis.

When I was first diagnosed, I knew not everything made sense. I fought for answers, found community and researched coping skills. However, my greatest teacher for managing fibromyalgia is the yin-and-yang concept. There is some good in the bad and some bad in the good. The light side and the dark side complete the whole.

Basically, imagine walking into a lit room with a couch in it. The light casts shadows in the room and on the couch you go to sit on. Your depth perception as you walk to the couch and how you see the couch would be way off if you couldn’t see the light or the shadow. You may not be able to make it to the couch!

When it comes to chronic illness and chronic pain, it is ridiculous to ignore our suffering. However, we will not make it out alive by merely focusing on the shadows. Our pain is part of the whole spectrum of life. Looking at it as part of a whole instead of viewing it as a large, insurmountable dragon can make it easier to manage and even befriend.

Yes, my pain has taken things from me. But I can take things back from it by sitting with it and learning from my body.

My fibromyalgia diagnosis, and my subsequent lupus diagnosis showed me who loved me. It showed me that I did not have to deny myself the pleasure of the moment anymore, even if it came with risks.

After all, who knew what was around the corner? If pain was earned, it was to be earned well, not through stupidity or shallow pastimes, but through meaningful and joyful actions.

It took my moody self coming to terms with life and learning what real suffering was in order to acknowledge that outside my little hidey-hole was sunlight.

With that said, a recap:

Darkness has a friend, its name is light, and they rely on each other. For every pain you feel, there is something lingering within waiting to shine on you.

This isn’t to say I’m thankful I have lupus and fibromyalgia. However, I’m a big believer that sometimes even with all the disaster planning in the world, we cannot avoid disasters. Ultimately we all must take the bad to receive the good, whether that’s as simple as traffic or as insurmountable as an illness.

For now, there is a tree in my roof, and I must talk about it.

This story originally appeared on The Spoonie Bard.

Getty image by Vitaliy Halenov.

Originally published: January 7, 2020
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