Long Covid Pro-Tip: Advocating for Yourself in the Doctor’s Office
Updated: Mar 29
The Pep Talk
Dealing with a chronic condition like Long Covid is a battle on many fronts. Getting the care you need and deserve from your doctors can be a big challenge. As you prepare for your next trip to the doctor, here are some helpful words to keep in mind:
You know your body better than anyone
You are the only person who can truly fight for you and the care you deserve
This is a time that requires you to be strong, driven and persistent.
Do not give up, fight for your quality of life and be educated about your conditions.
The quality of your health and your life depends on you
Tip #1: Symptom Tracking
People with Long Covid have reported over 200 symptoms, but of course not everyone experiences all of these. It can be very stressful documenting all of your symptoms day in and day out, especially when you don’t feel well. This is why Aila Health created an app to make symptom tracking simple and easy. Try to use the Aila Health app regularly to keep track of what's going on with you. Doctors will want to know what you experienced during your acute infection as well as any symptoms you have been experiencing post-COVID. Having a detailed and comprehensive list of your symptoms will help your healthcare team provide you with the best care possible. Most importantly, do what you can to create a list of ALL of your symptoms. Some people find it helpful to categorize them in two ways:
Some people find it helpful to categorize them in two ways:
Frequency - how often does that symptom occur? Is it every day, once a week, a handful of times a month?
Severity - how intense are your symptoms and which ones affect your life the most?
Tracking and documenting your symptoms is the best way to build a complete picture of all that's going on with you. The greater awareness you create around the frequency, intensity, and severity of symptoms will help you and your healthcare team create a treatment plan that fits best with your individual needs. Additionally, it may also be helpful to include a list of your physicians, diagnoses, abnormal blood work, current medications, and imaging or other lab tests.
Tip #2: Get Organized
Another perfect use for the Aila Health app! Rather than keeping a bulky binder, you can store all of your medical records and health information right within the Aila Health app. Organizing your medical records makes your life and that of your medical providers so much easier. Whatever organizational system works for you, take some time to pull all of your important documents together and keep them in one, easily accessible place. Each doctor’s office has their own process for releasing medical records, and this can be time consuming, but well worth your time and energy.
Here are some examples of medical health information that’s good to collect:
Previous lab results - such as blood work and biopsy results
Previous imaging records - such as MRI, EKG, CT, PET, X-Ray, ECHO, DEXA, etc. (Most places have a patient portal where you can register and print your reports, otherwise, contact the referring physician’s office to obtain your records)
Request visit notes or clinical summaries of your doctor’s appointments along with any verbal recommendations that you’d like to circle back to
Create a list of things you’d like to have done - such as tests you want to run, potential treatment plans, or medications you would like to try
Create a current list of your supplements and medications in addition to dosing instructions and how long you have been them
Tip #3: Educate Yourself
Your experience with COVID-19 can be a new and scary experience. On top of that, you can add on the the myriad of other diagnoses being thrown your way. It is important that you are able to talk about these illnesses with confidence with as firm of an understanding as possible. When it comes to understanding the post-viral impact of COVID, the research and information is changing constantly. Be sure that you are looking to credible sources for information, such as peer-reviewed studies, research institutes, and credible health organizations.
Use your knowledge and documentation to advocate for the care you need and want, such as imaging, bloodwork, referrals to other specialists, diagnoses, treatment, and medications.
Here are some suggestions for topics to look into for further education:
Information about PASC/PCS, including patient led studies. Look to reputable sources the Journal of the American Medicine Association (JAMA) and the British Medical Journal (BMJ) for research and evidence on Long Covid, its chronic effects, the findings in Long COVID patients, and other conditions it is triggering.
Information and studies on the conditions (autoimmune and otherwise) COVID-19 has triggered, such as Rheumatoid Arthritis, POTS/Dysautonomia, ME/CFS, MCAS, Autoimmune Disease, Fibromyalgia, and others. Try to also show the relation to COVID-19 and what you are experiencing. It may also be helpful to encourage the use of the new ICD-10 Codes for further testing and validation.
There are many good things that come out of self-education and becoming an expert in your disease. Not only will you elevate your own confidence with managing your health, but you will also help to educate your healthcare providers on the phenomena of Long Covid, which will take you one step closer to the high-quality care you deserve.
Tip #4: Don't Give Up
Self-education, documentation, and strong communication with your healthcare providers will help set you up for success. But at the end of the day, if you feel that you are not being listened to or believed by your doctor, know that it is ok to find someone else! Medical gaslighting is something that’s experienced by many chronic illness warriors in their pursuit of quality care. Your time and health is of utmost importance, so it is crucial that you find a doctor who will listen, believe, and support you in your health journey.
Being an advocate for your care is not easy, but it will make or break the quality of your care. Remember, the quality of your life depends on you and you alone!
Join a Community of Long Covid Warriors
Here at Aila Health, we support people in their Long Covid journey. Join our community and connect with other patients like you. Share your patient journey with others who truly understand what you are going through. Learn from other’s experiences and how they navigated their condition. Learn more.
We also offer free live group support for Long COVID patients! Join me for our weekly Wednesdays meetup from 9-9:30am PT (join for free in the Aila Health app). We come together as a community to share stories, connect with experts, and find healing. Learn More.
Research for Long COVID
At Aila Health, we are passionate about advancing the research for Long COVID care. Interested in taking part in our research efforts? Click here.
About the Author
Shannon Sims, PhD, Professor at Saybrook University’s College of Integrative Medicine and Health Sciences in the department of Mind-Body Medicine. Dr. Sims is also an integrative wellness coach and mind-body specialist with Aila Health where she focuses on supporting Long COVID and other chronic illness patients in their journey to greater wellness.
Important note: The article presented here is strictly intended for providing information 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 healthcare 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 or any other Aila Health information source. The opinions expressed in this (and all other) Aila articles are intended to spark insightful and educated discussion about issues pertaining to Long Covid.
Fraser, S. (2021). The toxic power dynamics of gaslighting in medicine. Canadian Family Physician, 67(5), 367-368.