Researching Axial Spondyloarthritis For Myself
One of the most critical issues I think we've all been facing in the past few years is the regularity of disinformation.
We have seen it during political elections and we’ve seen it during global pandemics. If someone makes a beautiful, shareable Instagram post full of so-called facts and data, we take it at face value. Unfortunately, this sort of information simply cannot be trusted. Just because something is shared online or even shared in an authoritative fashion doesn’t make it accurate.
It’s easy to fall down a TikTok rabbit hole full of opinions and ideas about chronic illness. People have all sorts of theories on how to cure our disease, or they think they know exactly what causes it, or they claim to know how to treat certain diseases holistically. While so many of these people may be coming from a place of love and care and experience, so much of what I’ve seen is misinformed, inaccurate, and dangerous.
We have to practice discernment, we owe it to ourselves
This means we have to question all sources. Sometimes we even have to question our doctors and outdated medical literature. Even if someone shares your disease experience or posts in a chronic illness community space, it doesn’t mean you can automatically trust their claims. I’m not suggesting that we ignore patient stories or perspectives — or that everything is false. I’m simply suggesting that we make sure to double-check things (especially things that feel either off or not entirely clear) before we put all of our faith into an idea or treatment plan.
One of the best resources out there, in my opinion, is PubMed. It is made up of more than 35 million citations in biomedical literature. It accesses the MEDLINE database, which is part of the United States' National Library of Medicine. I always suggest coming to this database to find studies related to whatever it is you’re searching for. Just type in things like, "axial spondyloarthritis keto diet study," or "axial spondyloarthritis Humira cancer rate." Those are just two random examples.
And to make sure you’re getting the best information, be sure to check the very bottom of each study, as there sometimes is a section entitled, “conflict of interest." This will tell you if any companies or third parties may be involved in paying for the study. It takes some time to get used to discerning the data, but it’s helpful.
If scientific jargon isn’t your strong suit, I recommend doing your research by going to editorial websites that list their sources and citations. It’s helpful when their content is also medically reviewed, which you can check for near the byline.
Red flags
Certain sentences and claims are red flags to me—because they are either partially untrue or totally untrue or completely unprovable. Every single person has a completely different experience and making bold claims about cures and causes only spreads disinformation. Some of these red flags are:
- Xyz cured my ankylosing spondylitis.
- Xyz causes ankylosing spondylitis.
- Xyz is the best exercise for people with spinal fusion.
- Xyz supplements put me into remission.
- Ankylosing spondylitis is a matter of mind over body.
- Axial spondyloarthritis only occurs in white people or is worse in males.
- Biologics cause cancer.
Take some time to question what people are telling you. Take some time to consider the source. Take some time to write out a list of questions and ask qualified people for the answers. This may be your doctor, or it may be other medical researchers and experts. It could be scientific journals. An informed patient is an empowered person.
Join the conversation