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Why It's Too Painful for Me to Keep Explaining My Medical Conditions

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I have lived with severe joint pain since I was age 11. My mom took me to the doctor to investigate. They thought I had all the symptoms of juvenile arthritis and ordered many X-rays. At the end of it all, I was labeled as having growing pains and a “sensitive” child. My mom thought I was a hypochondriac thereafter and ignored me. I have endured doctors calling me “crazy” or a “hypochondriac” for many years since. You know It’s coming when the doctor asks, “So, do you have any stress in your life right now?”

I have developed unexplained and increasing food allergies and medicine allergies or intolerance since my early 20s. I have had multiple knee surgeries, carpal tunnel in both hands resulting in one surgery, a dried blood clot removal in a finger, foot bunions since childhood resulting in adult surgery, disc bulges and ruptures resulting so far in one neck surgery and many injections and years of physical therapy, ligament tears resulting in ankle surgery, one confirmed miscarriage, three traumatic pregnancies, early hysterectomy due to massive bleeding, etc. I own almost every brace known to man and frequently look like the tin man with all my braces, taping and wraps.

It wasn’t until I entered my 50s when my eldest daughter was diagnosed with Ehlers-Danlos syndrome that I put all the pieces together. This answers so many questions. I have been misdiagnosed with lupus, twice, and diagnosed with irritable bowel syndrome, asthma, chronic kidney stones, chronic pain syndrome, fibromyalgia and osteoarthritis. My anxiety has increased with age. I have grown tired of explaining to folks why I am where a brace or why I am tired. I have become a recluse and this troubles me. Jesus is my Lord and source of faith and comfort, but Jesus commands to not struggle alone. I am struggling.

I’m looking in the mirror now, “I want to go to church now…but I just don’t feel like explaining my condition anymore.” I look at my brace on my right hand and my right knee. I look over at my crutches and think, “Maybe I should just use my wheelchair in the car and save my wrists and my knee.” I just spent an inordinate amount of energy getting ready, strapping up like a football player! I haven’t even done my hair or put some cover-up on my 50s acne. I’m exhausted just thinking about the questions that will be asked. Why can’t they remember the last 50 times I explained it?

“I have a genetic problem. My joints and tendons and ligaments don’t form right. I have constant pain.”

My chest is starting to tighten and I’m getting a migraine because I didn’t even notice that my jaw is clenching. I already took pain medication and now I want an Excedrin. Oy vey! If someone asks me one more time, “What happened? Why are you wearing a brace?” I think I’ll scream. I am certain now that I am having a full blown anxiety attack…mixed with a bit of anger. Oh Lord, help me. I don’t want to feel like this. Help me see this right. I am a broken human being and, after all, there really is nothing new about that. Everyone is broken and aging in their own way. I just haven’t quite accepted it yet. I need to work on that. I need to extend the same grace that I want to receive. There’s got to be a better way to deal with this.

I stay home. But it happens too often now. Stressful situations give me a claustrophobic, trapped feeling and I begin to physically back away. Sometimes I can’t hear what a person is saying anymore – especially if they are yelling. I can’t focus on words or people anymore, more vision blurs. I feel like I’m having an asthma attack, with tight chest and shallow breaths. My mind becomes confused and I can’t even keep a coherent thought or speak without stuttering. I have noticed it has become worse with age. Suddenly my stress threshold has lowered. I have anxiety attacks while driving in heavy traffic, in crowded places, in the doctor’s office. It concerns me greatly. I need to be alone most of the time or just with one or two people only.

With age come wisdom and growing compassion. I wish these things for myself but I need to extend these things to others who don’t understand chronic illness. “I just turned 57 and I feel like I’m 90,” I joke with others. Maybe these little boiled down types of statements will help others understand.

Getty Image by Sasha_Suzi

Originally published: September 26, 2018
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