How Doctors Should Treat Patients With Invisible, Chronic Illness

As someone who is suffering from an invisible illness, I would like to address an alarming factor about our healthcare system and the treatment we receive from doctors all around the world. First I will began telling my story. In the summer of 2016 I had a traumatic incident at work that sent me spiraling down into a world of health problems. In the previous years I had suffered many disturbing health issues ranging from thyroid issues, gastric issues, lethargy and panic attacks prior to 2016. I had been through similar incidents before involving my panic attacks. This one was different though. This one was the game changer for me. The severity of this attack locked up my entire body with a painful pulsating, which I now discovered were tetany spasms. After that day my health being going downhill until I needed to use a wheelchair. I was diagnosed with panic disorder associated with agoraphobia after being in the ER over 10 times. I spent time in a crisis response center and endured many trials of different anxiety and antidepressant medications, none of which worked.

I had to resign from my job and my whole life did a 180 – and not for the better. I became dizzy just standing up with vertigo episodes, I was unable to go out during extreme temperature changes, my heart was racing, I was having shortness of breath, I was blacking out, having constant headaches, plus my heart was fluttering and skipping beats. These are just the basic symptoms and do not account for the 40 other symptoms I feel on a day-to-day basis. Since every single doctor I had seen in the emergency room and outside the emergency room demanded it was my anxiety, I decided to take necessary actions in addressing that, but deep down I felt there had to be more to this puzzle. I finally found a medicine to help my anxiety, and attended therapy sessions, but it did not take away all the other symptoms I was having. So where did that leave me? Right back to my doctors.

It is now 2018 and seven doctors and specialists later that I am finally undergoing a treatment plan for a possibility of dysautonomia, mast cell activation disorder and an overproduction of adrenaline. What a relief – wow, what a relief, to finally be told it’s not “all in your head” or it’s “just your anxiety.” The frustrating and most disheartening thing about this is, I did not arrive at this diagnosis through the help of doctors. I arrived at this diagnosis through the help of people I found in support groups and months spent researching. It started out with anxiety and depression support groups, which lead me to a vertigo support groups, which finally lead me to dysautonomia support groups. Through monitoring my symptoms and recognizing dates they first began, I finally was able to determine what specialists would be able to further assist me. I know, I know, generally we are told not to self-diagnose, but what choice did I have? Give up on life or look for answers? Because let me tell you, this is no way to live life, not having some idea of why your body is malfunctioning.

So here is a letter to every medical professional out there in the world from patients living with chronic and invisible illness:

Please listen to us when we explain our symptoms. I know they may sound wacky if it is not your field of expertise, but we have lived in our bodies for x amount of years, and know when something is wrong. If you are a primary care physician or general practitioner dealing with a patient who is having an overwhelming amount of symptoms, take the time to discuss possibilities of causes, and send them to the appropriate specialist. All medical professionals please take note that if your patient is diagnosed with anxiety or other mental health issues, it isn’t always going to be the mental health issues causing the physical problems.

I myself have been dismissed as having an anxiety attack when I called the paramedics for kidney pain, along with shortness of breath and jaw pain. They did not make any attempt to check my vitals and walked out of my apartment with a disgusted look on their faces. This is only one of many situations I have undergone of being dismissed because of my mental health diagnosis. I found myself in urgent care a few days later with a kidney infection. I have heard from hundreds of others who have invisible illness share similar experiences after encountering medical professionals.

To the specialists who come across patients with chronic and invisible illness: We have likely been sent to you by our general practitioners or insurance for your expertise in your field of study. Not only is it a part of your job to be a healer, I would hope it is also the reason you chose to be in the medical field. We are not “faking it” and it is not “in our heads.” Some of us may already feel like a burden by being there, but we might be at the end of our rope. Many of us have been evaluated for mental illness, treated for such, but still have the same reoccurring problems. As a specialist, what most of us need and want is for you to listen to us: listen to us with an open mind, ask questions,and make a list of possible causes that are in your field of study. Then test and evaluate. I know your time is valuable and many others need your help as well, but please do not dismiss people without making any kind of attempt to even consider the possibility that something is really wrong.

To all the doctors out there, if your treatment plan is not working in your patient’s favor, do not put blame on them that they are not trying hard enough to get better. Many of us do not want to live such a life and would much rather be working or doing the activities we love to do instead of just existing. The majority of us would never wish this on our worst enemy. Everybody’s bodies function in a different way and what may work for someone else may not work for another.

Treat us how you would want to be treated. Take a second and imagine if it was yourself or your loved one in this predicament – how would you feel? What actions would you take? How would you feel being told you need a psych evaluation? How would you feel being continuously shut out and dismissed? We are human and often we are frightened. I ask you to advocate for us because you are medical professionals – you are supposed to be our saviors, and are often our last hope at attempting to find a way to live a normal life as best we can. So from the patients with chronic and invisible illness to the medical staff: please, help us.