When I find myself in online conversations with my disabled and chronically ill friends, one topic that unfortunately comes up most often is dismissal by the medical community. Even with the progress society has made with advocating for, and accepting, disabled lives, it only takes one bad experience with a healthcare professional to make you feel completely alone— and powerless. Disabled patients are seeking care at a time we need it the most, and are the least prepared to deal with medical bias, ignorance, arrogance, or just plain wrong information that we often receive during our appointment.

Indeed, it is so disheartening and frustrating when we are not taken seriously by the very people supposed to care for our health. However, I want to remind all disabled patients (and all patients, really) that YOU are your own best advocate. There are strategies to ensure your voice is heard during your clinical interactions with healthcare workers to help ensure that your healthcare needs are met. So let's dive into five specific tips to empower you to stand up for your care.

Tip #1. Document Everything

Keep a detailed health journal. Document your symptoms, the frequency and intensity of those symptoms, any triggers you've noticed, and how they affect your daily life. Also, record dates and details of all medical appointments, including what was discussed, the doctor's responses, and any treatments or tests ordered. This documentation can serve as critical evidence when advocating for your care.

I know this is a lot of extra homework to do, especially if you are in constant or acute pain. One suggestion is to record as much as you can digitally. It’s a good idea to ask permission first, but any physician confident in their care shouldn’t mind having your office visit conversation recorded. Additionally, a federal law entitles you to have full access to your medical record and all notes in them.

Tip #2. Bring a Healthcare Buddy

If possible, bring someone you trust to your appointments. This can be a friend, family member, or caregiver who's familiar with your medical history and your struggles with being dismissed or gaslit. They can help advocate on your behalf, provide moral support, and help ensure that your concerns are taken seriously by the healthcare provider. Make sure it is someone who understands proper boundaries around advocating. They are not there to REPLACE you. They are there to SUPPORT you. Make it clear to your care team at the beginning of the appointment that you are the person who should be addressed about care decisions, and not to speak to your support person as if they are you.

Tip #3. Seek Second Opinions

In the event you feel like you really aren’t being heard by your health care professional, don't hesitate to seek a second opinion. Another doctor may have a different perspective or be more open to listening to your concerns. Remember, you have the right to a healthcare provider who respects you and is willing to work collaboratively to address your health needs.

I have a rule of thumb that says “birds of a feather stick together.” If you happen to have a doctor that you do like, say your internist, but you want a second opinion about your cardiology care, ask that internist for a referral they would recommend. Most doctors will respect confidentiality as it concerns second opinion referrals.

However, keep in mind that the medical community is very fraternal. Doctors are loathe to criticize each other, regardless if they know each other directly or not. I’ve unfortunately known of situations where patients are legitimately trying to get a second, or third, opinion for a condition or diagnosis. They get further dismissed for “doctor hopping” and even worse, labeled “difficult.” In smaller towns or communities where medical specialists may be limited, discretion is key. I don’t like that the system is this way, but it’s better to learn to work within it, because unfortunately it is what it is.

Tip #4. Prepare for Appointments

Before your appointment, prepare a list of points you want to discuss. This can include questions about your symptoms, concerns about your current treatment plan, or inquiries about other diagnostic tests or treatments. Being prepared can help you stay focused and ensure that your most pressing concerns are addressed. It also demonstrates to your healthcare provider that you're informed and proactive about your health.

Also, don’t be afraid to do your own research prior to your appointment. While you aren’t a doctor yourself, and Googling symptoms can be scary, the internet can be a wealth of information that can help you and your doctor create a care plan more quickly than just letting your doctor ask routine exam questions. I especially love medical support groups and chat-rooms. There is so much to be learned from other’s experiences. Being able to say to a doctor that you have met someone, even virtually, who is living a similar experience, gives you some power in numbers. In short, it validates what you are going through with the simple phrase, “I’m not alone.”

One other tip I have for preparing for your appointments is to stay focused. If you have a rare or potentially complicated medical history, don’t let the doctor veer too far off topic from your most acute healthcare need. For example, I have a rare neuromuscular condition. When I go to my doctor for something like an ear infection, or I’ve injured my knee (conditions clearly unrelated to my neurological issues) I don’t let the doctor probe too deeply into that part of my health history. With doctor’s requiring shorter time with patients, this is less of a problem— they know they don’t have time to ask even if they wanted to. Even so, it is something to keep in mind. My basic point is you have as much control over your office visit as they do. Don’t be afraid to assert it.

Tip #5. Know Your Rights and Advocate for Them

Familiarize yourself with your rights as a patient, including the right to informed consent and the right to receive information about your condition and treatment options in a way you can understand. Don't be afraid to assert these rights during your appointments. If necessary, remind your healthcare provider that you are entitled to respectful, non-discriminatory care.

For severe cases of gaslighting or discrimination, consider filing a complaint with the medical board or seeking legal advice to explore your options. Most major medical centers have a Patients Bill of Rights or some similar policies in place. They should be posted on a wall in the lobby, or in literature you can ask for. They should also have a patient ombudsman or similar patient advocate person on staff to work with you in addressing your care needs in a fair and impartial manner.

Please note that this post is based on my own life experience and my own opinions. It does not constitute medical advice. Always do what you feel is best for your own care.