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When Positivity About My Chronic Pain Is Not Possible

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Once again I am dealing with a letdown. This seems to be a very common occurrence in my life with chronic illness. I feel like every time I take one step forward something else decides to throw me two steps backwards. I fight my body every single day. It is never-ending.

I got notice today that my insurance company once again denied a procedure. This procedure is supposed to finally relieve some of the pain I deal with on a daily basis because of my occipital neuralgia. I deal with pain from three separate chronic illnesses. My goal with this procedure is to alleviate 1/10 of the pain I go through. It is heart-wrenching to know that someone sitting at the insurance company is able to have so much power over my pain. I would never wish my pain on anyone but it is hard to sit back and suffer.

It would be one thing if I received this news at home from the comfort of my bed during a “normal” pain day. However, that is not how this life works. I feel like I am one of those people who gets kicked when they are down.  I was in the middle of a stressful day at work and in the middle of a flare from my autoinflammatory condition which leaves me in excruciating pain. I was having a reaction to one of my new medications. It just wasn’t a great day to drop this news on me. Oh, to top it off, the clinic informed me that I was in charge of going through the appeal process on my own.

I had arranged for a ride and a day off of work. Everything was finally put into place. This procedure was scheduled months ago and I received the news that it was cancelled six days before I am going in. Six days? Really, insurance company?

While dealing with everything that was going on I broke down. This is one of those moments where I just felt completely defeated; my pain wasn’t ever going to get better. This is how my life is going to be from now on. I must have done something terrible to deserve all of this pain every single day of my life. I let these awful negative thoughts creep into my head and take over.

I was reminded today mid-cry that I was being negative and my attitude lately has been very negative. This is not how who I used to be. I used to be a happy, productive, creative, spunky, 26-year-old woman. Now I feel lucky if I am able to get out of bed, make it through work, take the dog out, cook, and eat dinner. There is no time for anything else. Hobbies? Dates with my boyfriend? Walking the dog? These are all things of the past. My goal right now is to survive the war my body is raging on me. This takes all of my energy. There is none left over for positivity. Hell, there is none left over for anything besides crawling into bed and hoping my body will allow me to sleep.

I am still mourning the life I used to have. I feel like I was robbed of everything good in my life by my chronic illness, but that isn’t true. I have many things to be thankful for. I have a great boyfriend, a supportive family, a wonderful puppy, amazing friends, a flexible job, and a hardworking medical team.

I am allowing myself today. Today, I get to be negative. I can crawl into bed and cry my eyes out while holding my dog. I can watch sappy movies and order take-out. I can eat ice cream. I can mourn the life I dreamed for myself and my family. I am allowed to feel this way. This is my life. My feelings and emotions matter.

It is important to deal with feelings as they come up. Bottling up all the negativity is not wise. It will eventually come out. I realized today that being negative takes just as much, if not more, energy than
being positive.

Tomorrow is a new day. Maybe the pain will be better, maybe it will be worse. I cannot predict what is going to happen. I can, however, change my outlook and attitude. Tomorrow will be better because I will try and be more positive. I know I can’t always be positive because that wouldn’t be real, but I can take a step back and look at what I do have. I can try and make a change.

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Originally published: November 3, 2016
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