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My Diagnosis Story

I have never shared my diagnosis story because for a long time I was overly sensitive when admitting that I had a chronic illness. My diagnosis story isn’t very remarkable, but it became very personal very quickly. And for those you reading that don’t have a chronic illness, hopefully, this is an opportunity to learn how having an invisible illness really impacts a person’s perspective on life.

Let’s start at the beginning.

I didn’t get my diagnosis of fibromyalgia until Spring of 2017 but since childhood I have dealt with health issues. I can remember being as young as 12 having debilitating migraines with vision loss. Throughout my adolescent years, I suffered orthopedic injuries due to poor balance and coordination, as well as inflammatory attacks during times of high stress. I can even remember a doctor telling me I was having a severe inflammatory attack causing chest pain due to high stress, and I was instructed to cut some extracurriculars and decrease my work hours my senior year in high school. Over the years, it felt like more and more health issues came up and I sought treatment for them individually because I had no idea that fibromyalgia even existed. Despite the health issues, I still considered myself to be in good health because hey, I’m young and I had accounted all of weird health issues to me just being a weird person period.

Fast forward to 2017 and I had recently experienced several high-stress events. My husband and I experienced losses of property during Hurricane Matthew. At the time I was working in foster care case management which mean long hours, and very little pay. I had decided to pick up a second job doing in-home counseling which led to very little downtime. I was being very critical of myself because I had started to gain weight and I wasn’t as active as I had been in previous years since I was working so much. And then that March, my husband got in a really bad car accident and we were struggling to get to 3 jobs with one car, as well as dealing with the stress of getting our car fixed, managing my husband’s recovery, and hiring a lawyer. I was literally running on fumes and the sheer strength of not giving up.

One particular week in April, I went to work out with my cousin and was so exhausted but I had also agreed to go walking a trail with a friend. I pushed through and kept my commitment but by the time I got home, I could barely stand on my feet. The next day I tried to get up to go to work and the tingling pain in my feet was so bad, I knew it was better I go to the ER. In my head, I had already started to freak out about possible reasons for this pain. I have a family history of diabetes and lupus, and these were blinking in my head like a neon light, saying “you’re next.” I waited patiently at the ER as they ran tests. They were able to rule out diabetes quickly but felt that my PCP was better able to assess and test for lupus.  I left frustrated and downright scared for the follow-up appointment. By the time I went for my follow up, that tingling pain had spread all over my body like fire and I felt so incredibly weak and pained, I could only lay on my couch and cry.  Over the next several weeks, I had to get lab work after lab work done, at all times of the day, some during a fasting period, some after taking meds. I had to take 3 weeks off work because the pain was so excruciating that I could barely get out of bed. I was sent to my mother’s rheumatologist to run more tests but at the end of my last appointment with my PCP, he mentioned a possibility of fibromyalgia. I knew of one person who had this diagnosis but didn’t know what it was exactly. I reached out to get some initial information and went to my rheumatologist hoping that the lesser of the two evils was the case. And sure enough, after another series of tests, eliminating every other autoimmune disease and health conditions, I was diagnosed with fibromyalgia on May 12, 2017.

Now first I’d like to say I know I am blessed to have gotten my diagnosis so quickly. It took about 7 weeks from my first big fibro flare-up to get the diagnosis. I know other fibro warriors aren’t as lucky and can spend years waiting for doctors to listen and believe their symptoms. My journey felt so backward. I know the push was to ensure I didn’t have lupus since my mother has it and early detection is so beneficial to successful treatment outcomes. But as I went home with my diagnosis, and started my own research, I started to realize that all the health issues I’ve had since childhood was attributed as symptoms of fibromyalgia. This is when I became angry and frustrated with myself and with my doctor. To come year after year with gastrointestinal issues, migraines, insomnia, injuries from falls, chronic fatigue, chest and breast pain, migraines, restless legs, back pain, etc. and be told: “manage your stress” “take this medication” with no real foundational explanation for what I was going through felt like my health issues were not taken in a serious light all these years. I truly understood the definition of “invisible illness” at this moment because it wasn’t just the symptoms that were invisible to others, but my experience as a person that remained unseen as a whole. But I didn’t dwell on that part of anger too long.

You know how there are five stages of grief? Well, I was grieving life as I had known pre-diagnosis, so I quickly moved into the stage of denial. And I stayed there for a few years, to be honest. I soaked up available literature, learning the over 60 symptoms of fibromyalgia, all the lingo about flare-ups, spoons, and medication management. But at the core of myself, I didn’t believe this could be my new reality. I took my good days as evidence that nothing was wrong, and I could go back to my regularly scheduled routine of running and doing all the things. And every time I did, the bad days were there to greet me and remind me that this condition was not in my head, and I needed to take a step back and readjust to life with fibromyalgia.

If I’m honest, I stayed in this cycle of denial, mourning, and anger for far too long. I wanted desperately to have my life back. The life I was just beginning to create with my husband. We had only been married six months at the time of diagnosis. I wanted to live out the career I had planned, helping others in the day to day, meeting the needs of vulnerable people. But it felt like it was impossible to do because I only saw it as a possibility in the lane, I had thrived in. And now the reality was everything in my life had to change…my job, my lifestyle, my daily routine. One day I could run and kickbox multiple times a week, and here I am now having to decide if I have enough energy and muscle strength to get around the grocery store without the motorized cart. This couldn’t be my life. I was strong!!! I had always prided myself that no matter what I was going through, I had my strength. And this one-word diagnosis took that from me.

All of a sudden, I felt weak.

And all I wanted was to be strong again.

To not have to rely on medication to keep my pain at a minimum so I could go to work or church or school.

To be able to exercise regularly again.

To get up and go without a bag of pills or a heating pad, or anything else needed to relieve my pain.

But no matter how much I yearned for my old life, the fact remained that this was my reality and I needed to get over myself.

I finally had to make a decision. I had to decide to tap into something deeper, an inner strength that acknowledged that weakness and strength co-exist in the realm of faith. I had to look to God and say “okay, where I am weak, You are strong, so my weakness can’t be that bad because it brings me closer to You.” I had to have perspective. This was the first step of humility. Therapy was the second step. I realized that I was fighting my diagnosis instead of learning to live with it. And I needed someone to help me see where my need to be in control of my life came from, so I could stop losing it when the parts of life I can’t control happen.

Slowly but surely, I walked myself to a place of acceptance, deciding that if I’m going to live with this, I’m going to own it. I’m going to look in the mirror and declare that this was just another battle that I was built for. I had to boss up and take this diagnosis head-on until I didn’t look like a sufferer but a warrior. I realized I could fight for the quality of my life. It has taken intentional choices, and more than one change in perspective, but I’m here now. I’m owning that reflection in the mirror. I’m owning my story. I’m owning my diagnosis. And I will thrive.

To my fellow fibromyalgia and chronic illness warriors, I see you and honor you. Know that my reflection is yours and yours is mine.

It’s so important to face life’s challenges head on. It will come with all the emotions, more than enough breakdowns, and those ever-important moments of clarity that will change your perspective for the better!

Always remember, that seeing yourself can lead to great moments of growth and empowerment. Simply by accepting and owning your story.

See yourself.

And know I see you too.