Researching is extremely important when you have a chronic illness. Unfortunately, we can't only rely on what our doctors tell us about our illness, prescriptions we should take, treatment options we should try, etc.
It's important that we do our own research and be our own advocate because our doctors don't always have our best interests at heart. Sometimes money and greed come into play and I don't want anyone to fall victim to that. It's exhausting and oftentimes a full time job doing research, making sure we go to the doctors we need to go to, getting diagnosed, and finding a doctor who agrees with the treatment options we want to try.
It's crucial to do research outside of one website, book, etc. The more research you do, the better. The information from multiple sources should match up. If you talk to your doctor about the research you find and they don't seem knowledgeable or agree with what you have found, find another doctor.
Wikipedia and Google are not reliable sources. I have also found the Mayo Clinic not to have accurate information about some illnesses. One place to start your research is with nonprofits for your illness. For example, trusted nonprofits for endometriosis would be the Endometriosis Research Center, Endometriosis Network of Canada, the Endometriosis Foundation of Houston, EndoWhat?, and for alpha-1 antitrypsin deficiency, it would be the Alpha-1 Foundation.
Another research avenue is to go to a specialist's website; for example the Center for Endometriosis Care as they specialize in endometriosis or pulmonologists who specialize in alpha-1 antitrypsin deficiency. Gynecologists are not knowledgeable about endometriosis and shouldn't be trusted to give you reliable information. Many doctors are not knowledgeable about alpha-1 antitrypsin deficiency so it's important to get information from a specialist.
Reading about what others have been through with the disease you have can be helpful, too. Oftentimes, patients who are well seasoned with their illness can be more knowledgeable than some doctors. Support groups for your illness may have reliable information as well.
The more research you do the better. Don't agree with any treatment you aren't 100% on board with and don't agree with a treatment you haven't researched. It's your body and you have to live with your decision for the rest of your life, your doctor doesn't and drug companies don't.
Back in 2011 when I first tried Lupron, I didn't do my own research and wish I had. I now have osteoporosis and I'm sure it's from the injection even though no doctor will admit that. I'm 28 years old and have the bones of a 60+ year old. Had I done research, I wouldn't have agreed to have it injected into my body. I trusted what my doctor told me and only went by that. This is why I am so adamant about everyone researching their chronic illness, treatment options, talking with others who have tried different treatments, etc.
I hope you find this information helpful.
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Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.