I'm a Professional Patient -- My Health Is My Life

I feel like I'm a professional patient right now -- a professional patient being one who has found that maintaining their health is a full-time job. This is not a job I applied for, not one I accepted, and not one I want. In fact, being a professional patient might be the worst job one can have. So, let's talk about being a professional patient and how to live with it.

How I'm a Professional Patient

Bipolar disorder can make you feel like a professional patient any time it wants to. When your every moment is dealing with the sick signals coming from your brain, it's a full-time job. On top of that, you may be attending a hospital day program, seeing a therapist, going to psychiatric appointments, getting blood tests, going to the pharmacy, and so on. It's more than a full-time job when you're doing all that. 

In my case, I'm a professional patient because not only am I dealing with bipolar disorder, which, for me, chronically acts up, but I'm also dealing with new diagnoses of a hypermobility syndrome (very flexible joints that cause pain, among other things) and postural orthostatic tachycardia syndrome (POTS; an abnormal response by the autonomic nervous system which causes problems when standing up). New diagnoses mean new specialists, new tests, and learning new coping tools. My every minute is now dedicated to dealing with illnesses. 

Are Professional Patients Malingerers?

Interestingly, I found a definition for "professional patient" in Segen's Medical Dictionary. It is the following:¹

"Fake patient. A person who feigns illness for various reasons, making the “illness” their job. Professional patients include malingerers filling a psychologic need—e.g., with Munchausen syndrome and drug entrepreneurs seeking prescriptions for drugs to be sold later."

That's clearly not what I'm talking about, but I wonder how many patients get put in that category unfairly? When taking care of your health becomes your life -- through no fault of your own -- you can look like someone who fits the above, maybe. But, as I said, unfairly.

Being a Professional Patient

The very fact that your whole life becomes managing your illness(es) means that you have time for little else. The problem with being a professional patient, then, is you become an amateur everything else. Do you have friends? Of course, you do. Do you have time to see them? Maybe you don't. Do you have hobbies? Maybe you do. Do you have time for them? You probably don't. Being a professional patient is like that. It crowds out all else. This is one of the main reasons that being a professional patient is so hard. You're so often doing it without a break. And if you're me (single), you're often also doing it alone.

Looking at that reality, and worse, living with that reality, is certainly depressing. And if you already have bipolar disorder that likes to act up, then depression may be oppressing what's left of your life. Being a professional patient is not for the weak of heart.

Living with Being a Professional Patient

What I've learned, though, is that illnesses and their requirements ebb and flow over time. Yes, right now, I'm a professional patient with more on my slate than I feel like I can handle. This is true. But it won't always be this way. I did manage to get into a rhythm with bipolar disorder, to some degree, when it was the predominant issue, and I'm confident that over time, I'll get into a rhythm with the other illnesses too. This knowledge is a weapon with which to fight the depression. True, that rhythm will falter again at some point in the future, but there are ebbs if I just look hard enough for them.

What Others Can Do for the Professional Patient

While being a patient is my problem and no one else's, I always appreciate it when someone helps with it. And my guess is if you know someone who is a professional patient, they would love your help too. You could:

• Offer to drive them to appointments
• Offer to pick up prescriptions
• Offer to help with paperwork or needed phone calls
• Offer to attend appointments with them to help gather information from the doctor or help provide information for the doctor
• Offer to help clean house
• Offer to do the grocery shopping
• Offer to make dinner or drop off frozen dinner(s)
• Visit them in the hospital or at home
• Bring them things to take their mind off their illness (books, magazines, puzzles, etc.; make sure these things aren't taxing)
• Send encouraging notes, cards, texts, emails, etc.

Or finally, you could ask them what they need from you. Many people have trouble asking for help, but if you offer, they may be more open to it. If the person says they don't need anything, suggest one of the above because I guarantee they do need help, they just either don't see it or don't want to ask. 

And finally, please try to understand how hard professional patients work every single day without pay, benefits, or time off. Try to cut us some slack. Try to be there for us even though it's hard. Try to understand we want to see you. We want to go out. We want to do things. However, our illnesses are holding us back, and we really hope you won't help that against us.

Source

1. Segen's Medical Dictionary, Professional Patient. Accessed October 15, 2021.