To all the doctors that I saw over the last 15 years,
Thank you for teaching me that doctors are just regular people too. You may think you have all the answers, you may even claim to know all the answers but you don’t. We are all learning and unless you have the condition you’re treating a patient for, chances are you will never truly understand.
For so long I put all my faith and trust in you guys. I put all my eggs in the baskets of doctors who claimed they could help better my quality of life. Nothing came of the high hopes I had built and I learned how to cope with my conditions.
I have been called an attention seeker by some of you, a liar by others, a drug seeker and mentally ill. I have been led down paths by doctors with medications, injections and even surgeries that were unnecessary.
I have been diagnosed and rediagnosed to later be told that diagnosis is bullshit by one of you. I have been looked in the eyes and told that my formal diagnosis of 10 plus years is not a condition at all. I have been poked and prodded and pulled in every direction possible only to feel I have remained at a stand still for years now.
It is incredibly discouraging that your community of doctors seem to work against each other instead of with each other. It makes my life very difficult having different doctors for each condition and the fact that you all have different opinions and have no filter when it comes to sharing your opinions. I will feel so certain that I’m headed down the right path to heal when I will be blindsided by one of you who says what I’m experiencing is not what I’ve been diagnosed with.
It is so confusing because I know exactly what I’m feeling and the research I’ve done in regards to my diagnoses. I feel confident that some of you are helping me with proper treatment but when a new doctor comes along saying something completely different it throws me in a whirlwind.
Most recently one of you claimed that Visual Snow Syndrome was not real. I am usually a good advocate for myself now, but in that moment it was as if I were a child again. I felt taken back to an age where I was confused and scared to speak up. All I could do was pretend to be enlightened by what you were telling me. In reality I left feeling resentful; I felt like I had wasted my time in all honesty. I understand that people don’t know what they don’t know and you obviously hadn’t had experience with someone like me; but I think you overstepped by saying that.
It’s one thing to say you don’t agree with a diagnosis but it took me almost 10 years to receive my diagnosis of Visual Snow Syndrome and it was not a simple manner. There were many, many appointments with different types of doctors and many, many tests completed. No one had questioned me about that diagnoses after Mayo Clinic diagnosed me, at least not until you.
Looking back I wish I told you, “with all do respect I disagree and I’ve spent a third of my life searching for a diagnosis and being tested in the process. So though you may not think Visual Snow Syndrome is a real thing, it is and I live with it.”
Maybe had I said something along those lines then I wouldn’t be feeling so distraught over the whole thing. But the truth is, this isn’t the first nor do I think this will be the last time this happens.
I had similar issues prior to be diagnosed with Fibromyalgia. Fibromyalgia however is more commonly recognized by people especially the medical community. Though that diagnosis took me very long to receive as well, I wasn’t questioned about it the same way I am with my Visual Snow Syndrome.
I know there is very little recognition of the condition and more often than not many of you that I see do not even know what Visual Snow Syndrome is. After explaining it many of you often confuse the static I see for things such as floaters or ocular migraines. But I know the difference and I know what I am experiencing is real and not normal. And to be quite frank it’s not my job to educate you about the field you work in.
I often feel like that’s what I end up doing at most of my appointments. I spend the majority of my time educating most of you on my conditions during my appointments when I feel I have sought out your professional guidance because I have done all I can do on my own. I show up to appointments to be educated by you, not the other way around.
This often leads me to leave the appointment with no new information or guidance as to what to do next. Then I question why I sought out help in the first place, when all you guys have mostly done is let me down. I understand that you can’t cure a chronic illness. I understand there isn’t always medication or a quick fix. What I don’t understand is why not one of you has taken the time to help me come up with a true treatment plan that helps all of my diagnoses.
The current exercise routine and diet I am on was barely influenced by any of you. I began a long two year elimination diet that has led to me to find food sensitivities solely on my own. I also researched the appropriate exercises to do to help increase my heart strength and cope with my fibromyalgia symptoms, again no thanks to any of you.
I was unable to find a single one of you that would address the long list of prescription medications I was taking. It wasn’t until my psychiatrist finally stepped in and helped me ween off of what I felt I no longer needed because the rest of you refused to take me off a prescription, or monitor that process, unless you prescribed the medication. It took me going to 8 different psychiatrists to find her; and I thank God I did because she was the first stable doctor I found that I could depend on since Mayo Clinic.
Over time I learned that it was my responsibility to take care of myself and do the work. But as a child you guys let me down. You created trust issues that are now deeply rooted in me. I fear speaking up in many situations because I feel like my words were never really heard as a child by many of you and still fall upon deaf ears at times. I fear that if I share how I am really feeling I will be told that it’s wrong or it’s all in my head or I will be totally discarded.
To be totally honest I feel like there was a lot of medical gaslighting going on which created a lot of medical trauma for me. I get very bad anxiety before any doctor appointment now and I procrastinate going to see any of you or making new appointments because I do not want history to repeat itself. I don’t want to have to deal with any of you thinking you know my health, situation and life more than I do.
I wish I knew then what I know now. I wish I could go back in time and tell the younger version of myself to speak up more and trust you doctors less. I would have ignored every one of you every time you told me not to google things. I would have done more research sooner and I would have spent more time educating myself rather than educating you all.
I think had I been more guarded or at least older, I probably wouldn’t have been so deeply affected by all of you. I think some doctors forget the impact they have on their patients or may not even realize they have a lasting impact. But each one of you that I saw, I remember.
I remember when you told my mother that I was crazy and should see a psychiatrist because I was making everything up and test results were all normal. I remember when you accused me of seeking drugs because I told you that the medication wasn’t working and I wanted to try something else. I remember when you told me that I would get better. I remember the pain I was in after you completed that “necessary” test that came back inconclusive. I remember the tears that fell down my cheeks and I remember begging you to help me. I remember you discharging me as your patient without ever telling me you were done seeing me, while still knowing how much I was struggling.
But I remember those of you that were kind to me and the ones I felt had good intentions regardless of the outcome. I remember feeling validated by some of you and I want to thank those of you that were there for me and didn’t just listen but heard. I remember those of you that were honest with me and the sorrow in your voice when you told me that you felt their was nothing more you could personally think of to help me and that I’d be wasting my time and money continuing appointments with you. I appreciated your honesty and your compassion for my situation.
Some of you hurt me, some of you helped me and some of you did literally nothing at all. I want to say thank you to those of you that took an interest in me as a patient and did your best. To those of you that made me feel like I was the problem, rather than my health issues being the problem, you are what’s wrong with the health care system.