When you have a medical mystery or even an established-but-complicated health issue, you are probably going to have to fight like hell to get the healthcare you need and deserve.

Some doctors don’t have the expertise to help. Some doctors don’t have the time to dig for answers. And sadly, some doctors won’t care or will think you’re just an unhinged hypochondriac.

You’ll meet doctors who are rushed, rude, dismissive, and indifferent. But you will (hopefully) eventually meet the right doctors! Those doctors will change your life, give you hope, and restore a sense a calm in your scary world.

Over the course of my medical mystery, I did tons of my own research. I made my own suggestions about possible diagnoses and potential treatments. I asked tons of questions at every visit. I requested biopsies and lab work-ups. I asked to try different medications. I found ongoing studies and clinical trials with people who sounded like they had similar symptoms to mine. And most importantly, I researched specialists around the nation. When I found one that sounded like a perfect fit, I asked for a referral to this expert.

That referral has made a huge difference in the arc of my health story! I hate to think of where I’d be now had I not advocated so fiercely and relentlessly for myself.

My Tips for Self-Advocacy

• Get comfortable reading scientific publications. Focus your research on papers and case studies that are published in reputable medical journals. Look for clinical trials that are peer-reviewed and double-blind. The NIH’s National Library of Medicine (PubMed) and ClinicalTrails.gov are good places to start. Please don’t get your medical advice from TikTok, Reddit, or random people on social media. It’s tempting to listen to people’s anecdotal stories, but you’re more likely to be led astray. I definitely went down some terrifying, unhelpful rabbit holes from information found through unreliable sources.
• Go to every doctor’s appointment with a printed list of questions and topics you would like to cover – maybe even send the list ahead of time if your doctor has email or a portal-based messaging system. It’s sometimes overwhelming and easy to get off track when you only have a 15-30 minute appointment booked. I would often send links to journal articles to my doctors as well. Also, document your physical symptoms and how they change from appointment to appointment. When you have an ongoing, complicated issue you will not remember your full timeline in detail!
• When your appointment is over, get a copy of the clinical notes from your visit. I have often found mistakes and omissions in my doctor’s visit notes. Some of them are minor, but some are significant enough that they could impact future care and insurance approval of treatments. If you see discrepancies, call your doctor’s office and get clarifications and/or corrections made. If a doctors notes that they said something or explained something that they did not, ask them to go over it with you again.
• If a doctor is not making time for you, treating you with respect, or taking your issues seriously – FIRE THEM (if there is any way you can.) I am aware that specialists are in short supply and sometimes you don’t have much choice as to the doctor you see. On top of that, referrals to new experts can involve long waits and insurance hurdles. But if a doctor makes you feel unseen, ashamed, or unheard – listen to your gut and find other options. For me, this meant finding a doctor at a medical school in another state. There wasn’t a single doctor with expertise in pemphigus in my entire state. Every time I see my specialist, I drive over four hours for my appointment. It is 100% worth it!
• Find your support squad, and choose them wisely. When I was diagnosed with pemphigus, I had the lucky timing of the International Pemphigus and Pemphigoid Foundation’s (IPPF) Patient Education Conference being held just a few weeks later. I was able to virtually attend the two day event with my family. I learned so much about my options and what I might experience. I was also incredibly lucky to land at UNC Chapel Hill Medical School for their amazing patient support group offerings. So far, there has been a weekly yoga class for patients like me. They’re also gearing up to begin a six month series of webinars, specialist Q&As, and patient-to-patient chats. People with pemphigus are rare, so having the ability to lean on one another and learn from one another is so valuable. I personally would caution people from joining unmoderated social media groups run by individuals who are not experts. When I thought I had lichen planus, I joined a Facebook patient group. While I did find a lead to my current doctor in that group, I found the experience of the group to be negative overall. Lots of unestablished and proven ineffective treatments were promoted regularly.
• Speak up about your needs. If you’re in the U.S. you likely have the federal protection of the Family and Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA). Pemphigus is a qualifying disability. There are protections for your job that you should take advantage if you need to. You don’t have to share all the private details of your illness, but don’t miss out on the leave to take care of yourself as you weather the storm. You do not have to struggle in silence. Also, sharing openly with friends, family members, or a therapist can be one of the most powerful ways to advocate for yourself and share what you need from the people around you.

I’m not going to sugar-coat it – advocating for yourself is hard work. It’s exhausting. It can feel like a full-time job. But the ultimate goals are answers and better outcomes, so gear up and get ready to fight for yourself!