How To Become Your Own Health Advocate

Long Covid is a new illness and the medical profession is racing to keep up. More research appears every day but your average doctor in a general health practice might not be on top of the latest studies. Worse, you may encounter medical staff who do not take your illness seriously or who dismiss it as being “all in your mind”.

In this environment you need to become an advocate for your own health. This means being informed, articulate, assertive and armed with useful data. Self-advocacy requires a bit of extra effort and this may be daunting if you are fatigued and brain fogged. Just remember it will be worth it in the end.

Nine Steps To Self-Advocacy

1. Get and keep proof of your original illness. Keep copies of test results, take photos of any positive RAT tests. If you don’t know you had Covid, get an antibody test done ASAP. Beyond that, sit down and document the dates, symptoms, treatments and outcomes of your suspected bout of Covid.

2. Start documenting your symptoms and daily experiences. Keep track of:

• Fatigue (rate it on a 1-10 scale)
• Other symptoms and their severity. This might include shortness of breath, brain fog, difficulty speaking, post exertional malaise, pain, headache, loss of smell, rash etc. Whatever individual symptoms you experience, take note. Rate this on a 1-10 scale as well if it helps.
• Medications taken, including any supplements or alternative medicines
• Sleep, including hours slept, sleep quality, insomnia, naps
• Activity including exercise, work, housework. Include mental activity as well.
• Lifestyle factors – things like stress, other illness, social interaction, personal issues
• Health indicators – things like resting heart rate, blood pressure, HRV, weight. Try to be specific and do measurements at the same time each day / week.

Ways to document things

• Keep a diary (cheapest and simplest option)
• Keep a spreadsheet
• Use an app or health tracker. Bearable is a good options.

3. Get copies of any tests and keep on file. Make note of any abnormal results (even if they’re just outside of, or on the edges of, the normal range)

4. Buy health tracking items and wearable devices, if you can afford to do so. These include watches, heart rate monitors, chest straps, blood pressure machine, a pulse oximeter, a thermometer. Use these to create objective measurements of what’s happening, how it correlates to symptoms.

5. Learn to do your own research – but do it properly. Make sure you approach everything with critical thinking skills. Learn about the concepts of peer review, how research is conducted, damn lies and statistics. Be skeptical. Stick to reputable publications e.g. PubMed, Reuters, Medical News Today. Be aware that scammers are keen to make money from you and that you are vulnerable.

6. Join social media groups for support. But again, be skeptical and aware that nonsense brews in these environments. Check our list of Long Covid resources and groups.

7. Learn how to advocate for yourself with your doctor. Make sure you present as rational, reasonable and skeptical. You’re trying to avoid being labelled as mentally ill or a hypochondriac. Plan your visit, have notes and questions ready, have documentation and have research on hand to back yourself up. If it helps, take a family member or friend who can support you in the process.

8. If you feel your doctor is not listening to you or dismissing your symptoms, you can hire a professional patient advocate, or seek help from official advocacy groups, or a local Long Covid association. Do a search on “patient advocate” or “patient advocacy” in your country or state.

9. Be prepared to seek a second or third opinion if you are not happy with your doctor.