Mastering the Art of Becoming Your Own Medical Advocate

As a chronically ill person, learning to advocate for your medical needs is an important way to secure consistent and comprehensive healthcare. 

Living with a chronic condition like psoriatic arthritis or psoriasis means becoming a regular at your doctor’s office.

But too often, chronically ill people and those with disabilities get shunted out the door or dismissed when it’s determined that they’re being overly dramatic or exaggerating the impact of the condition.

To manage life with a chronic illness, becoming your own medical advocate is a crucial way to ensure that your care is consistent.

While the medical world has some work to do as well, it’s up to you to take charge of your care to ensure access to comprehensive and consistent treatment that makes life with a chronic illness manageable.

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Why is it important?

Chronically ill and disabled people are often mistreated or disbelieved by their physicians.

The impact of this can be devastating. Some people even decide to avoid seeking treatment to shield themselves from the possibility of maltreatment.

“When a patient is experiencing challenging medical symptoms, they become extremely vulnerable and dependent on a doctor to feel better or have a way forward,” says Toronto-based clinical and health psychologist Dr. Kaley Roosen. “When they are in that vulnerable position and not taken seriously or dismissed, they experience a lot of fear, anxiety, and worry about their future.”

If this treatment persists over time, it may lead to people reacting with defensiveness and trepidation, even when a physician is trying to help.

“It can feel oppositional, and when you’re judged and misunderstood by a professional, it’s easy to give up or feel suspicious of any help,” adds Charlotte Fox Weber, a psychotherapist and author of “Tell Me What You Want.” “If the system lets you down, it’s tempting to pull back further and lose hope that there’s care and support that’s possible,” she says.

Medical avoidance can feel like the best option for self-protection, but in the long term, the only person it’s hurting is you.

Counteracting your fears is a daunting prospect, yet there are plenty of methods available to rebuild your confidence when navigating the medical maze of life with a chronic illness like psoriatic arthritis.

Making personal medical records

As someone who has been diagnosed with 10+ conditions, I’ve learned how to keep medical disbelief at bay by maintaining comprehensive medical records independent of the medical system.

I’ve moved many times, so my medical records are split between various practices all over the country. Plus, my medical history is complex, dotted with a mixture of accurate and inaccurate diagnoses.

To ensure that at least I have the whole story, I keep a detailed record of my entire medical history separate from my physicians.

In one mammoth Word document, I keep a note of each diagnosis and medication tried — with notes on their levels of success and any side effects experienced.

I record each appointment, test, and investigation I undergo in a clear and detailed timeline. I’d recommend using Excel, as it’s probably more efficient, but there is now too much history for me to transfer!

I also bring a summary sheet to appointments with new consultants so they have a medical history to refer to.

Refining your communication skills

I wish I could say it’s going to be an easy journey to become your best medical advocate, but it isn’t. You need to build a strong foundation with robust communication skills.

“Concision and clarity help if you find yourself struggling to express what’s going on, which often happens at stressful times, especially if you’re unfamiliar with the jargon and you’re not sure how to accurately convey the problem,” says Weber. “It’s OK to say that you’re struggling to describe the problems, but you’re going to try to anyway.”

While it may feel odd, practice communicating the critical points before attending consultant appointments. It will make it easier when you come face-to-face with your physician.

“Be polite; no matter how outrageous the situation, at least be respectful,” Weber adds. “It’s never regrettable to be respectful, even if it’s to someone rude and disrespectful.”

“If you do lose your temper, forgive yourself and let others forgive you, too,” she continues.

Keep asking questions, even if a doctor tries to rush you. They have limited time, but so do you, and this time is yours to use. Ask for clarity if you need it, query how processes will work, and take note of their responses.

Don’t be afraid to ask for a second opinion or to change doctors if you feel like there is no progress being made.

Preparing for an appointment

“Write down questions and requests before the appointment and let the doctor know you have a few things on your list you want to ask about,” says Roosen.

Prepare for any appointment like you would an exam. If you go in tired and distracted by work, then things will go over your head, questions will go unasked or unanswered, and you’ll struggle to remember everything.

Get a good night’s sleep, revise the notes from your last appointment, and prepare notes with everything you need to go over.

“And lastly, going to these appointments is emotionally draining and takes a toll on your mental health,” says Roosen. “It is important to put plans in place to take care of your emotional and physical needs, for example, taking the day off for medical appointments.”

Recruiting a support network

“Often when we are in the face of a doctor, our well-laid-out plan to advocate and push back when being dismissed falls to the wayside as we try to survive the appointment,” says Roosen. “This is where another person can be very important.”

Whatever role you want your additional advocate to take, make a plan together to ensure you’re both on the same page with your approach.

After appointments, debrief with your loved one. This will identify any gaps in your listening and make note-taking easier later.

Tap into your wider support network, too. Being your medical advocate doesn’t end at the doctor’s office. It means taking care of yourself outside of the hospital, too, and allowing others to help.

“Talk to other disabled or chronically ill persons about their experiences, get support and validation from trusted friends and family, and create a self-care plan for assisting in validating their emotional needs and reacting healthily to any emotional distress activated by the doctor’s appointment,” adds Roosen.

“Close friends and family can be instrumental in providing practical support as well as reminders that you are valid, important, and deserve to get your medical needs met,” she says.