Making Health Decisions

It feels like every time I go to the doctor, they want to make a change to my care. Every change strikes fear and anxiety. Will this new medication affect my other medications? What is the time commitment for this treatment? How much will this test cost?

I appreciate doctors who continue to come up with creative and informed treatment options for chronic and complex conditions. However, not all doctors can accurately explain the benefits and risks of all treatments.

Managing my own care

I am lucky enough to have a dermatologist who can do this for my HS care. She patiently explains the benefits, risks, and challenges of every treatment. But not all doctors can do this. I have had to come up with an informal way to decide how to manage my own care.

First, when a doctor approaches me about a new course of treatment, tests, etc. I don’t commit right away. I will often ask the doctors a series of questions:

1. Is this procedure/treatment/test necessary?
2. Will this procedure/treatment/test affect any of my current medications?
3. What are the chances of my insurance covering this? What does my out-of-pocket cost look like if they don’t?

These questions serve multiple purposes. For example, recently a doctor wanted me to complete a sleep study for narcolepsy (I have sleep apnea and chronic fatigue). However, I had none of the common symptoms of narcolepsy. Also, the test would have required me to stop some medications for two weeks. This would have resulted in terrible side effects and probably a miserable 2 weeks for my mental and physical health.

Doing my own research

Second, I will usually ask for a follow-up appointment so I can do my research. I will then go and consult with either my dermatologist, psychiatrist, therapist, or others. I usually do my own research, as well as looking at communities like this for advice.

Taking this time to get medical advice and conduct my research is extremely valuable. I will take the time to weigh the benefits and risks of a procedure, treatment, or test, which means I am not rushing into something I will likely regret later. Also, if the proposed course of action requires a large bill, I can take the time to budget and plan for the expense.

Weighing the pros and cons

Lastly, I often have to weigh the pros and cons of a procedure, treatment, or test. Will the medication provide results that outweigh the side effects? Will the procedure ultimately help my situation, or does it bring more risks that I can’t afford?

Often, I go to my follow-up appointment more informed and better prepared to advocate for myself. I can ask clarifying questions and talk about other options if needed. I have found that when I make rushed medical decisions, I suffer. Especially with HS, the consequences can be extremely painful.

It can be difficult to speak up and tell a doctor you need time to make a decision. Especially when a procedure is involved, I find that the process moves so fast I can barely understand what is going on.

Deciding against the test

Ultimately, I decided against the narcolepsy test because it seemed unnecessary and the risks were too high for my comfort level. Also, my insurance was not likely to cover the cost as I did not have any of the symptoms for narcolepsy.

Too many of us are rushed into decisions and then have to suffer the consequences. With HS, our consequences are serious and painful. It is important we take the time to understand something that will affect our quality of life, no matter how uncomfortable it may feel.