Monday, January 8, 2018

What A Chronically Ill Patient Wish Medical Professionals Knew

I just got discharged from a four day hospital stay. Before then, it had been awhile since the hustle and bustle of the hospital world collided with my own. This most recent admission surfaced a bit of emotion. Confrontations with nurses and doctors became overwhelming. While some medical professionals can drone on forever, losing themselves in science-y musings of the human body, it reminded me of the valuable information I wish they knew when handling their chronically ill patients.

#1 When I complain about pain, it is significant. 

I do not moan about my many ailments to be a drama queen. In fact, I prefer not to break out the melodramatics. I keep most complaints to myself. When I do mention my symptoms, they are serious.

I have an exceedingly high pain tolerance. For example, due to severe allergies from my diagnosis, I suffered through sepsis without any pain medication. Therefore, I might not seem like I am in pain when in all actuality, I am. Perhaps I am engaging in conversation, happily knitting, or completing homework—none of which disregard the pain I claim to be in. Conversely, this applies to the opposite, too. It is incorrect to assume I am pain free judging solely by external circumstances.

#2 I do want to be compliant.  

Medical professionals are often sought as a wealth of knowledge in their field. They are paid to offer their advice and suggestions each appointment and most do their job in the best interest of their patients. However, my chronic illness is not typical. Its ensuing health problems are not always obvious and are not guaranteed to be treated in the same manner as the average case. Years of medical mistakes have resulted in a lack of trust. Try not be frustrated if I am not immediately game for every treatment or procedure you mention.

#3 Being sick is stressful, but stress is not the cause of my symptoms. 

Pills, appointments, uncomfortable symptoms. Managing day to day life while chronically ill is difficult, especially considering the health implications that may result. It gets frustrating. As a psychology major, I know how mental health can vastly correlate with physical health. That's why I have learned helpful coping mechanisms. Dismissing my symptoms as a consequence of stress or anxiety is not okay. Stress and anxiety are two common repercussions that are secondary to long term chronic illness, but they do not cause my genetic conditions.

#4 Accommodating my quirky medical needs is appreciated.  

One of my diagnoses, Mast Cell Activation Syndrome, causes life threatening allergic reactions to perfumes, lotions, and scented products. Even in a medical environment, controlling all triggers is impossible. Every now and again a strong laundry detergent or hairspray will get to me. Whether it is changing into hospital scrubs or wearing a gown, it makes my family and I abundantly happy that you are willing to go out of their way to keep me safe!

#5 Appointments are just a snapshot of my day. 

Appointments are booked for a 15 to 20 minute time slot. That duration is probably the most put together and functioning I will be in a day's span. A smidge of makeup and nice clothes can conceal a lot! You do not see the remaining 23 hours of my day: fainting upon waking, puking up my lunch, or the nights spent in agonizing bone pain. Take that into account before sending me away without a concise plan, the discouraged expression clearly evident as I exit the office building.

#6 Without experiencing chronic illness firsthand, you do not know what I am feeling. 

I would not wish chronic illness on my worst enemy. It is not easy to convey what my body is feeling. An attempt to empathize does provide comfort, but forget the comparisons. They are usually inaccurate. True understanding of a patient's point of view only comes from those who have endured a chronic illness themselves. To say you 'get it' is almost belittling.

#8 Patients and doctors are both real people. 

Medical professionals have a career to be admired. Although your intervention in my care is necessary, you are more than prescription writers and procedure performers. That is why I ask the sonographer about her weekend or the cardiologist about his family. My desire is to be treated as a real person, so I treat you as such. I do not want to be viewed as the next number in an assembly line of problems to be fixed.

#7 I cannot do this without you. 

I do not have the resources to control my medical care. Despite my greatest efforts, I cannot prescribe my own medications, order tests, and operate in surgery. I cannot diagnose, organize hospital admissions, and schedule follow ups. These things are imperative to the chronically ill. You have the ability to change our lives. For the good or for the bad. Please don't abuse that power.