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When I Learned to Balance Self-Advocacy With My Doctor’s Advice

As a patient with chronic illness, one of the most important things you will learn on your journey is how to speak up and stand your ground.

Throughout my own battle thus far as a relatively prolonged medical enigma, I have learned just how imperative it is to not only know your stuff, but to not let outside invalidation from those who don’t understand influence you. You may be given many incorrect diagnoses, be put on medications that may do more harm than good or be given a “quick fix” to cure what is “probably seasonal allergies.”

I’m very appreciative of doctors in general and the lengths a good portion of them go to to ensure the wellness of their patients. However, if you have a chronic illness, chances are you’ve also encountered your fair share of dismissive professionals or those who rely solely on the research in front of them and their specific cohort of patients to determine what’s right and what’s wrong. Basically, if you don’t fit in their box, you’re making it all up.

My personal struggle with chronic illness began approximately six years ago, and I have since visited hundreds of specialists in almost every area of expertise in hopes of trying to get to the root of my pain and fatigue. I have always been the type of individual who is a bit more passive, who tries to avoid confrontation in fear of hurting the other person’s feelings and who is probably a bit more trusting than I should be.

These personality traits are what make me a kind and sensitive person, but they have also gotten me into some pretty sticky situations. As patients, we want to be able to trust our doctors; it is actually imperative that we do. We are literally and willingly placing the safety and security of our lives in the hands of our care providers.

When I first began seeing doctors, I was a bit more submissive to recommended treatment, even when it seemed totally outlandish to me at times. As time went on and treatments got weirder, I began to educate myself. Not only did I begin to do my own research to contribute to my quest for answers, but I also understandably lost a lot of trust in doctors. It wasn’t my choice — I was conditioned to become wary of recommendations.

Over the course of my treatment, I have encountered my share of relatively ignorant and disparaging professionals, but I have also had some really great doctors who clearly truly cared — they wanted to help me, but I couldn’t trust them. I lost so much trust in the system as a whole.

When my chronic illness initially developed, severe anxiety soon followed. For whatever reason, I grew to learn that the only place I could feel safe was at a doctor’s appointment. However, I have long since been stuck in a place of overwhelming dissonance. What do you do when you begin to lose trust in the very people who are supposed to have the answers? It’s a lonely place to be.

My built-up lack of trust and coinciding strong desire to have control over my treatment has left me in a shaky place to say the least, but it has also taught me a lot about the importance of self-advocacy. I now absolutely speak up when I disagree with a certain diagnosis or am cautious about an ordered treatment or procedure. But I’ve also begun to feel it necessary to let the doctor know the exact treatment I prefer, the blood test I feel would be helpful and the specific specialist I would like a referral to.

Over time, my frustration with my lack of answers and constant state of misery turned me into somewhat of a medical control freak. Because, after all, I just want to feel better — and when nothing is working, you understandably feel you have no choice but to do it all yourself.

After speaking to many in the spoonie community who have encountered similar challenges, I know now I’m not alone in this situation. I’ve had varying responses from doctors when it comes to my persistent attitude. Some are willing to work with me, yet others are taken aback and baffled as to why a patient would know anything about medicine.

When you’ve gone an extended period of time without answers to your ailments, it often leaves you facing this dialectic. You want to get better. You want that support, caring and empathy from your doctors. You just want them to understand, so they can fix you, and you want them to validate your pain when no one else can.

But you also want to know for sure that their suggestions are the right suggestions, and for me, it has become difficult having my desperation perceived as arrogance at times. However, I have learned a few things from this that I think are important to share.

It is so vital that you educate yourself on your symptoms and your illness, no matter what it may be. You are the only one who knows your body, and it is therefore crucial you are a contributor to your own treatment. If you don’t like something or feel uneasy about a certain recommendation, it’s your job to speak up.

However, don’t necessarily follow my lead completely. More recently, I have come to learn there has to be a balance. There are some amazing doctors out there. Find the ones who will listen to you because they’re also likely the ones who care the most. They’re the ones who will analyze your case in detail and recommend the best and most effective treatment.

It is important to self-advocate. But doctors are there for a reason, and sometimes it’s OK to hand over control.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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