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  • Open communication with those around you

    Posted by frankie-p on November 4, 2020 at 5:00 pm

    When I was first diagnosed, I struggled a lot with communicating affectively with the people around me. What that resulted in was constant misunderstandings and feelings of resentment towards those who cared and tried the most.

    For example, when it came to going out with friends, I always went with what was easiest for the group and never made myself or my needs a priority. How about you? Have you dealt with this?

    karina-jeronimides replied 3 years, 5 months ago 2 Members · 1 Reply
  • 1 Reply
  • karina-jeronimides

    November 5, 2020 at 3:13 pm

    When I found out I had FA, it was by phone, and I was alone. I had left to study for one year in France to write my dissertation, a month after sending my blood to Athena diagnostics somewhere in the USA, and I did not want to wait one more year to get my diagnosis. I had seen doctors and undergone exams for 7 years before I sent out my blood. Back them they had just discovered the gene affected. Not that many doctors knew about FA, and so it took a while to get an answer.
    After hearing my diagnosis, I immediately called my mom, and she freaked out. She was mainly upset about my brother, who even though younger, had it worse. I had to calm her down, and tell her I was fine… It was like I had to be a rock for them. I also could still walk, well wabble, and I was enjoying my life at the time. I had a boyfriend, I was getting a PhD, I was in Paris, I had good friends. But that year abroad, was not productive. I mainly traveled with my French friends, who each at a time would hold my hand/arm to make sure I didn’t trip, and went from A to B without an assistive device.
    But yes, communicating with others about my diagnosis just didn’t happen. I’m not sure I could make sense of the cruelty that mother nature had decided to hit me with. And it was only when I lived life, when I was in the company of others, that the voices in my head would shut up, and I would stop crying violently. But, yes, it was truly difficult to sit anywhere and not think about the fact that very soon, my ability to walk, to be me, and to be loved, would be gone forever. And probably that’s why I just couldn’t share my very dark thoughts with anyone, especially not with my mother who needed hope above everything else. The rest of my family was clueless, cruel and very selfish.

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