The Challenges of Being a Female Chronic Illness Patient.. or is it just me?
I have wanted to talk about the role that gender plays in our healthcare system for a while. I planned on starting with the differences between male and females in the medical field but I have a different area in mind today.
This morning I was reminded of something else that I need to get off of my chest. I also am curious to know if anyone else has experienced some of the things I am going to be talking about.
Since I was diagnosed, I remember my voice and opinions carrying very little weight with those people in the medical field. Most times, if my parents didn’t either ask for something or validate what I was saying, I never would have received the care I needed.
Granted, I was a teenager when I was diagnosed so understandably, the words of my parents carried more weight. I accepted that since I was lucky enough to have parents who always talked about things with me, as opposed to just making decisions and letting me know what they decided about my body and my future.
However, as I got older, nothing seemed to change. I still felt like I had no voice. I still needed my parents to speak up about things in order for them to get done.
Most recently, I have needed my dad to help me out with a few things. I desperately needed pain medication for my migraines since I was already accused of being a drug seeker at urgent care and the emergency room was getting financially insane in addition to emotionally torturous for me. It took one phone call and my doctor was providing me with everything he should have prior to my dad getting on the phone. It also took an in-person conversation with my dad for this doctor to treat me like a human being. I swear this man was a different person at my next appointment.
When I had been in the ER the past few times, it was my boyfriend who doctors listened to. It was like they needed him to validate what I was saying. They spoke to him about my pain level and what he witnessed which I understand to some degree since patients can come off as emotional or overwhelmed but still… nothing he said differed from what I was talking about. He came off more authorotative, understandably, given he is a male and not the one in the vulnerable position. However, when I was alone in the ER and told the doctor that I thought some of my issues were from dehydration and asked if they could give me another bag of fluids, I was completely dismissed. I literally was walking out of the hospital without any saliva in my mouth. But, of course, I was told I did not meet the criteria for dehydration (based on what I truly had no clue.) It took another week of chugging gatorade, drip drop and loading up on water to feel like I was okay in that department.
I have needed medications refilled that the pharmacy was giving me a hard time about. BUT, when my boyfriend called everything was peachy and able to be done. Why? I have no idea.
This morning was another mini catastrophe. I have a CT with contrast scheduled for this afternoon at a local imaging place. My mom reminded me that I was always given benedryl beforehand and since this seemed relatively simple, I figured I would give them a call and see if that either needed to be ordered or if it was standard. Once I said I had always received benedryl before getting contrast, the nurse told me they wouldn’t perform the test. I was told I needed to be admitted to a hospital, take prednisone orally for a week and then have an IV drip for 13 hours.
When I tell you I was upset…. I mean, I was REALLLY upset. I continued to tell this woman that I never had a reaction and I barely remember getting those pre-meds. I expressed how anxious I was to have this test done and that it needed to be done based on the results of a previous one I had. I asked if I could take oral benedryl and was met with a hard NO. I was in tears while speaking to her and literally just had to say “ok” and hang up the phone.
Once the call ended, I dropped to the floor in hysterics. I felt like I cannot win in this fight to get healthy… or healthier. If I am constantly battling the healthcare system, nurses, and doctors… how am I ever going to get actual help?
I immediately called my boyfriend in tears and told him what happened. While I was on the phone with him, I started texting my dad and gave him the number to the imaging place where I had the appointment today.
GUESS WHAT? The doctor told my dad that as long as I take the benedryl orally and have someone drive me home that they could perform the test there.
Obviously, that made me incredibly happy but it also makes me a little afraid. It makes me feel like I need other people (mainly guys) to help me get adequate medical care. I am so intuned to my body. I have been dealing with illness for 15 years. I generally know what it is I need and when I don’t, I always ask a doctor whom I trust.
I just feel like my voice doesn’t matter as much as it should. I don’t want to have to rely on others to get things done but time and past experiences have shown me that I cannot make a lot of things happen on my own. As hard as I try, I cannot get through to certain people like my parents and boyfriend can.
Do any of you feel this way at all? Or have experience with this?