In Brooke's honors English class, they periodically will have a writing assignment where they can free write or select a topic to write about from a couple of options. She has done a free write before about watching Pickleball at a country club and listening to the conversations and drama (hilarious, by the way!), but this time she chose one of the topics: What is Your Greatest Fear? Her response is below. The assignment says to just write and not worry about spelling or grammar- to just get out your thoughts basically. She did a great job, and I am so proud of her writing. But, at the same time, reading this is so heartbreaking.
My Greatest Fear
My greatest fear is the medical system. Growing up it was small things like spiders, blood, or even sleep walking. But now that has all changed. So many things have accumulated over time to cause this fear. I have been failed countless times by the system, whether it was in an appointment or at the hospital. Most of the time when talking to doctors it seems like we're drowning underwater, because so many don't even attempt to help, I fear I may never find a cure to my sicknesses.
Sadly nowadays, if doctors think you're too difficult or complicated, they just give up. Whenever they are presented with cases like celiac disease, ibs, or stomach ulcers, they have a fix. You can cut out gluten or take a certain medicine. Unlike my situation, that is not the case. Medicines don't work and there is not a simple known cure. This has turned into me getting so scared having to go to appointments because most will just tell you it is anxiety or in your head. I wish this wasn´t the case; doctors should be people who I can look to for answers, and trust that they will understand me. However, I am stuck constantly going to appointments, sometimes weekly, to just walk away with nothing. It's sad because it never used to be this way, the doctors actually wanted to look for answers, and I trusted that they could help. So so many people that deal with chronic illnesses or rare things are just dismissed of their symptoms and quality of life. It is gut wrenching to hear doctors say they've tried everything when in fact there's so much more that can be done. I wonder all the time what changed the doctor's opinions. Did I become too old? Too skinny? Too pretty? I have no clue, and I don't think I'll know why for a long time. What I do know is there are so many teenage girls who are in the exact same boat. Having to constantly advocate for themselves because we have "invisible illness". It's a lot more different than breaking an arm and wearing a cast for six weeks and being completely better. Insead, we get told from doctors that they don't believe in certain things like vascular compressions or that because we don't have a specific symptom (even though we have every other one) there's no way it could be this or that . Even if they do believe in rare illnesses, there are very few people who actually help cure the issue. Many think that the fix is worse than just living with the cause, but they have no idea as to how bad the original issue is. No one knows the immense pain I am in daily, unless they have had the same thing, so for them to assume the recovery is worse, is a very single minded solution. I never even knew that pain levels could get this high. My main thing is I don't blame the doctors that have done me wrong because they didn't know what else to do. I blame the ones that decided to take the easy route and blame it on anxiety. I can guarantee that if their little kid was suffering this much they wouldn't just settle for a diagnosis of anxiety, when it's clearly more than that. My mom and dad never should have had to see their baby girl so malnourished she almost died, or having to get a new feeding tube shoved up my nose while coughing and having my eyes just water. It breaks my heart having to tell them I'm in so much pain time after time, so I can't even imagine how hard it is for them to hear that. No matter the amount of tears I have cried in offices, been talked down to, or seen as a little kid who doesn't know anything, I won't let this fear overcome me, because I know I can't succumb to the fear and don't have any other choice but to fight.
All that being said, not everyone in the healthcare field is bad. I have recently found a great doctor who specializes in cardiology, pediatrics, and complicated cases (being me). Currently we are also waiting to go out of state for more specialized physicians who actually will believe the severity of my situation. From encountering so many great nurses during my er trips and hospital stays, I can testify that most of the time the nurses are so much more compassionate and truly care for you over the actual doctors. That is just one of the many examples of the medical system failing. I pray that things will only ever improve, with technology and knowledge expanding every day. But for now I'm disappointed. The PTSD I have from doctors will never go away; it will haunt me at every appointment I have. Holding my breath until the doctors come in being hopeful they might finally be the one to cure me and not push me to the side. So that is my greatest fear. Never having answers, because certain doctors just don't care or have me in their best interest. No one chooses to have this life, so we shouldn't get punished for it being complex or rare, because it is out of our control. All doctors should understand that as a patient we are trying our best and we expect the same from them.
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