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My story of tribulations and victories


We must end the stigmas associated with chronic illness and mental health.

Hello, my name is Tammy and I'm honored to share about my experience regarding suffering due to stigma. Two years ago I fell very ill. I had no clue that I would have to PROVE my illness to the world. I'm an advocate that even my providers could not help. Ehlers Danlos can be systemic and quite complex. Many viewed me as an attention seeker despite my obvious serious symptoms. Many viewed me mentally ill yet denied me compassion. Had my providers at the time understood what I was facing there would not have been so much confusion for my friends and family. I slipped into the cracks and it nearly cost my life. Dynamic disability means that one day I function and the next I may be laid out. It broke my heart to become too sick to finish my BS in Behavioral Health Science. However, my studies prepared me to become my own safe place and advocate for others. The Ehlers-Danlos Society rescued me! I was granted a scholarship to the EDS Emergency Care Summit! Even more surprisingly I won the EDS Summit Whova, world leaderboard. I had to learn how to stay alive. I look forward to another scholarship as a reward. Rare disease advocacy fulfills me. Awareness is critical for rare diseases. Too many patients are losing hope from feeling like a disgrace. Being sick can be a full-time job. The last thing they need is more weight put on from disbelief. All are precious. All deserve to be treated with dignity. I vow to help break the stigma.


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My story of tribulations and victories

My story of tribulations and victories
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