Be Mad

For the first 16 years of my life, I was perfectly healthy. My exercise levels, eating habits, and health records were above average.

So when I walked into my pediatrician’s office with invisible symptoms and no obvious explanation, I was completely brushed off. I saw them 4 separate times before my mom took me to a new doctor in hopes of actually being heard. I saw this new PCP 4 or 5 times before she, too, dismissed me. Over the next several years, doctors told me over and over again that I was fine.

My family, of course, knew that something was very wrong. They lived with me. They saw me sleep for days at a time and lose my ability to process simple information. They saw my speaking and thinking abilities decline. They watched as my existence collapsed around me.

But this was a private struggle.

My doctors were not there for these moments, so they did not understand. My friends and extended family and church leaders and teachers were not there for these moments either.

Essentially every person in my life thought that my symptoms were my choices, and without a diagnosis, I couldn’t prove them wrong. You would think that the world would be kind to a young, sick girl, but instead I was blamed for my own illness. Not being able to live my life was hard enough, but almost worse was the omnipresent disapproval. I internalized this, and I began questioning myself. I began to think that maybe it was my fault that I was sick. I agreed with everyone around me: I was being lazy. I was to blame. I was useless.

One day, I decided that I was done being sick. I told myself it was over. The doctors were right; it was in my head. So I got out of bed and I pulled out my old running shoes and I went on a 20 minute run. I did the whole thing without fainting, but within the first ten steps I had a searing pain in the back of my head and my body felt weak. When I got back, I collapsed on my bed and slept for 4 days.

This was obviously incredibly counter-productive. I should’ve been taking care of myself, not trying to meet uninformed outsiders’ expectations.

I’m sick ((haha get it?)) of ignorant people thinking that they know anything at all about my situation. It’s been over two years since this started and I still have to deal with unjust scrutiny on a daily basis.

Last Christmas my extended family thought it would be okay to start a rumor that I have an eating disorder, and that is why I am sick. Apparently, two diagnoses from medical professionals after years of testing mean nothing to people that want to make their own assumptions. Apparently, I am no longer the authority on my own health. Why support me with my debilitating illness when you can make up your own story out of thin air, just for kicks, instead?

I am frequently yelled at or given dirty looks when I go to my car parked in a handicap spot. I get extreme anxiety about entering or leaving my vehicle. Sometimes its easier to make myself sick from walking than to endure public scrutiny over whether or not I deserve the spot. Why mind your own business when you can make a disabled person feel bad about using accommodation?

I have spent years being argued over and gossiped about, tossed from doctor to doctor, looked over, ignored, and hated on because of my sickness. I’ve been judged because of my physical appearance by doctors, friends, family, and strangers.

I used to be a sixteen-year-old girl that thought that everyone had a right to their opinion. I used to feel bad for making people uncomfortable, and I felt bad about being upset by the words people said. As a kid, as a female, as someone that tries to be nice to everyone I meet, I am used to swallowing my anger and letting things be. I assume, always, that I am in the wrong.

I go on runs instead of listening to my body beg for sleep and I park in the back of the lot instead of daring to take a handicap spot. I let others blame me, and then I blamed myself.

No longer.

I am furious at the members of my family that decided to take an emotionally and physically traumatic experience and turn it into a way of hurting me even more. I am furious at the doctors that refused to take me seriously, despite having no reason not to. I am furious at the teachers that tried to stop me from taking online classes because they thought I was being lazy. I am furious at the members of my church that called me a sinner for not attending because I was too sick to go. I am furious at every single individual that thought that their ignorant input meant anything at all.

I have learned that I do not have any obligation towards anyone, ever. I never have to justify myself or my illness or my limitations to anyone. I do not have to inform stupid people about my personal experiences in order for them to respect me. My trauma is not justification for me to be treated fairly. I deserve to be treated fairly regardless.

I have accepted the fact that this is a battle I will have to fight for the rest of my life. I will gladly fight it. I am done accepting what the world wants to think about me.

I am aware that the majority of people that read my blog do not have a chronic invisible illness, let alone two. I know that it might be hard for you to relate to me, but I hope that you are as angry as I am at the way people treat each other. Stop being timid and shy and nice about things that deserve your anger. I thought I did not deserve to be angry, but I was so incredibly wrong. I hope you look at the things you let slide in your life and you stop letting them slide. I want you to look at your swallowed anger and find what matters to you. Then, be angry, be loud, be heard.

I am furious, and you should be too.

2 Responses to “Be Mad

  • Tamra Bishop
    2 months ago

    Brooklyn,
    I just want to say I enjoyed your post about how people treated you and continue to treat you regarding your disability. My daughter has fibro/chronic fatigue and went through many of the same experiences as you when people wouldn’t believe her, laughed at her, and refused to try to learn and understand her health problems.
    We need more people like you to speak out about how it feels to have fibro/chronic fatigue, etc. especially because it is an invisible disability.
    Thank you.
    Tammy

    • Brooklyn
      2 months ago

      Hi Tamra!
      I appreciate your comment so much! I’m so sorry your daughter has had experiences with stigma and discrimination. I hope through continued awareness we can minimize these issues for everyone! Let me know if there’s ever anything I can do to help you or your daughter!
      Thank you so much,
      Brooklyn

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