The Pep Talk
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: Documentation is Key
Patients 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. Doctors will want to know what you experienced during your acute infection as well as any symptoms you’re 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:
Frequency--as in how often that symptom occurs (1 day a week, a handful of times a month, daily, etc)
Severity--what symptoms are the worst and affect daily life the most
To recap, keep a running list of acute infection symptoms, a list of all your symptoms, and then a list of the symptoms that affect you most. Additionally, it may also be helpful to include a list of your physicians, diagnoses, out of range blood work, medications and lab tests.
Tip #2: Organize Yourself
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 app. This makes your life and that of your medical providers so much easier. It is an efficient way to locate materials you need on the fly and keep things chronologically documented (and also to show trends) so your entire appointment isn't spent reviewing, but working on solutions instead.
Here are some ideas for the sort of health information to include:
A list of pending tests/ tests you would like, potential treatments you would like to try and any verbal physician recommendations to circle back to
Imaging records (MRI, CT, PET, X-Ray, ECHO, EKG etc..) Most places have a patient portal where you can register and print your reports
All previous lab work. Companies like Quest and Labcorp have patient portals where you can access prior lab results. If you do not use these companies, it is imperative you request copies from the lab or doctors office where you completed this blood work. The same goes for any biopsy results
A list of current supplements and medications. If you can, also include how long you have been taking these as well as dosing schedules
Tip #3: Educate Yourself
Your experience with the COVID-19 virus might be totally new to you, as well as 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. 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: imaging, bloodwork, referrals to other specialists, diagnosis, treatment/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.
As you seek to educate yourself, you will also educate your physicians and bring awareness to this newly emerging phenomenon of Long COVID.
Tip #4: Persistence
Providing your physician with documentation and evidence will help to set you up for success. However, if you feel that you are not being listened to or believed, remember that you can always pursue care with a new doctor. Medical gaslighting is something that many chronic illness patients experience in their pursuit of quality care. Your time and health is of utmost importance, so it is important that you find a doctor that will support you in your healing journey.
Remember, the quality of your life depends on you!
Virtual Post-COVID Clinic
Coming soon to Aila Health! Living with debilitating Long COVID symptoms can be challenging. Some symptoms aren't easy to diagnose when they overlap with many other conditions or aren't easily visible to healthcare providers. Aila Health's COVID recovery care team is here to help you manage your symptoms and get back on track with your health. Learn more about our virtual Post-COVID Clinic and join the waitlist today.
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.