It’s Important to Be Your Own Health Advocate

Before I got sick I thought doctors knew everything. I thought doctors would know exactly what to do if I was ever unwell, and that I could just mindlessly follow their advice.

My experience with chronic illness couldn’t be more different. I remember the first time my specialists asked me, “So do you think you want to go on this medication?”

I was floored. Weren’t they supposed to tell me what to do? Weren’t they supposed to know what would be best for my body? 

The truth is, when it comes to pulmonary hypertension (PH), there is no magic pill. It’s all trial and error, and with each medication there is a cost and a benefit. No one can ever be sure of the extent to which they will work for you. The medication in question had a lot of side effects and its benefit might have been minimal as I was already on a lot of other medications. It was really up to me to decide if I thought it was worth it.

There have been countless other instances of this: I was asked if I wanted a heart monitor fitted under the skin to record potential arrhythmias, and I’m often asked if I want to go up or down a dose of my medications. It is my responsibility to be in tune with my body and how I’m feeling. 

This is particularly characteristic of my illness, as there isn’t a huge array of empirical tests to measure possible deterioration. I have a right heart catheter to test the pressures in my heart about once a year, and an echo every six months or so, but other than that, a big part of monitoring my condition is self-assessment. 

While doctors, particularly PH specialists, have an impressive wealth of knowledge and insight, I have learned that they don’t have PH. They don’t live with the illness day in, day out. 

I’ve learned that the doctor’s office isn’t the only place to learn how to manage my condition. I’ve gathered so many great tips from forums and from chatting with other PHers online. For example, someone recommended taking my Uptravi (selexipag) as soon as I wake up and the rest of medications a couple of hours later so all the side effects don’t hit me at once. This made a humongous difference in my quality of life. 

I’ve seen many amazing specialists and super nurses. Of course, like most people with complex health histories, I’ve also had some frustrating experiences with general practitioners who don’t fully understand my condition. I’ve found it is important to be my own health advocate.

This means not taking a passive backseat in my health journey. This means asking questions if something doesn’t make sense. This means researching my options and paying close attention to my symptoms. 

It’s not about not trusting doctors, but I try to be as actively involved in my health journey as possible and vocalize any concerns I have. After all, I am the only one inside my body. 

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.