I had a femoral line inserted into my groin for the first time today. Before the procedure took place, the doctor had a cold/freeze numbing spray used on me to numb the area. It was continuously sprayed into my vulva approximately four times and this caused an instant burning, acidic pain that lasted for several minutes. (It is the evening now and I still feel discomfort down there.)
When I told the doctor that this was causing me immense pain, he didn't say or do anything. He was completely apathetic and just carried on with the procedure whilst I clenched my legs closed whilst trying to cover my genital area with my hand over my hospital gown. I sobbed throughout the procedure due to this burning pain.
My pain was brushed off and I was told that this pain had been caused by 'anxiety'. I was repetitively offered anti-anxiety meds, despite not having an anxiety disorder.
When the procedure actually started, it triggered a severe sickle cell pain crisis. This was ignored and the man just kept going. I had to grab onto my phone as hard as I could to try to distract myself. I tried so hard to keep as still as possible.
I was vocal about both issues during the procedure: i.e. the freeze spray causing a burning pain in my genitals and also about my sickle cell crisis when it started. He did not stop at any point or give me a short break or any time to breathe.
I was gaslit about my pain continuously and repetitively offered anti-anxiety medication (and at one point, paracetamol). My vagina did not burn because I am 'anxious'. It burned because you carelessly and excessively sprayed a chemical substance onto it! Why were anxiety drugs pushed so hard on me?
I am not someone who struggles advocating for myself when I need to, but my concerns are never taken seriously (i.e. not even verbally responding to acknowledge that I had expressed severe pain and discomfort - I essentially just talk to myself because I don't even get an 'oh, okay' or just a grunt of acknowledgement).
I feel as though the above would not have happened had I been a man. This is just speculation and I am ready to accept that I may be wrong on this point.
I am lucky that I insisted on having my boyfriend in the room with me as I have a loving and understanding partner who is able to provide me with some comfort. He tried so hard not to cry whilst trying to comfort me today and it absolutely broke my heart to see the pain/sadness in his face. I could see that he was trying to be strong for me and I felt so sad seeing him like this.
The account detailed above is just one of the endless examples I have experienced. I have had multiple yearly experiences similar to this for many decades now as I have had to deal with this sort of thing from when I was an infant (my mother used to try so hard to advocate for me from infanthood, so that is how I know this was happening back then). As someone with severe health issues, I have always regretted making the decision to seek emergency medical assistance or consenting to treatments. I always wonder why I bother. I feel so dumb every time I am hopeful or optimistic.
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I live outside London and a train ticket to my appointment cost £90 today. I have some friends who have said they'd like to support me and come to appointments with me, but I do not feel comfortable asking people to spend that much money on the train every couple of weeks. Side note: I am annoyed I spent this much money on travel for this bullshit day. If I knew the above would happen, I would have never consented to undertaking this treatment that is meant to happen every few weeks. I would love the extra support, but I don't want receiving that support financially burdensome for them.
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How do other people handle or get through experiencing medical trauma repeatedly or traumatising hospital experiences? I am the only person I know with my health issues and I feel alone and isolated not knowing anyone with severe, chronic health issues who understands what this feels like. I have read so many published news articles and posts over the years of patients with my condition detailing similar experiences of poor care, so I know I am not the only one who has to deal with this.
[I don't mean this in a mean way, but I am not interested in hearing about people who, for example, maybe broke a bone once and had their injury understood and addressed right away.]
I would very much appreciate hearing from those who have severely debilitating, lifelong illnesses that are constantly misunderstood or brushed away repetitively. I would like to hear from other patients who try so hard to advocate for themselves when they are at their most vulnerable and how they handle it when it fails.
#oneofmanystories #sicklecell #NHS #rant