After so many years of struggling to find my voice in advocating for my healthcare, today I am proud of how far I have come.
Speaking up for my needs and advocating for the best available care hasn’t been easy. Processing medical trauma and discovering the reasons for my self-doubt have required years of talk therapy. I have unlocked a tremendous amount of strength from being able to talk openly about the difficulty I have trusting myself and others.
Usually, I feel confident in my abilities to advocate for myself and for others. But nothing has tested that more than being alone in a hospital isolation room.
When I am in the hospital, my mom usually is there with me. She is someone I can turn to if I need extra support. My entire life, my mom has reassured me and given me the courage I need to continue pushing forward.
Although I have been able to speak up for my needs and I fully recall my medical history, sometimes I miss important details. Having another set of ears and another voice to speak up for me always helps me to feel more at ease.
But this time, my mom was unable to be in the room with me because of the COVID-19 pandemic, which made me realize how much love and respect I have for all she does.
Being alone also has given me the confidence to advocate for myself. It has taught me that my mental and physical needs matter. Using my voice to self-advocate not only has helped me to communicate more effectively as a patient, but it also has helped me to realize my self-worth.
When I am left on my own to decide whether something needs urgent attention, I always question myself, asking, “Are my needs more important than those of others right now?” I wonder if the mental or physical hurt that I am experiencing is worthy of care. My mind becomes filled with anxiety, and my thoughts can easily become my worst enemy and prevent me from speaking up.
Being alone in isolation in the hospital during the pandemic taught me that if I don’t speak up for my mental and physical needs, nobody will. People cannot be expected to fully understand the suffering that I am experiencing. All that I can do as a patient is educate others about how I feel and hope to be acknowledged and treated accordingly.
Nothing good happens when I fight with my inner self and get caught up in comparing myself to others. Just because someone may have it “worse” doesn’t mean I am not worthy of care and compassion.
In isolation, I learned to communicate my needs effectively in a way that the medical professionals treating me understood. Instead of breaking down when I didn’t feel listened to, I spoke up to clarify confusion about my treatment or care. Instead of shutting down difficult emotional and physical feelings, I chose to ask for what I needed to feel better. If I felt that someone was not following guidelines for my care, I made calls to my own specialists so that they could explain what I needed.
When I was isolated, I didn’t allow my emotional hurt or physical discomfort to get the best of me. Instead, I realized how much ability I have to advocate for myself.
In my loneliness, I felt powerful knowing that I matter. I found my strength.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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