The internet has transformed the experience of a chronically ill patient. We are no longer bound only to doctor-patient experiences, and, for someone with a chronic illness that carries with it a history of doctor abuse, that’s a very important concept. When the doctor prescribes medication that only makes you feel worse or not better at all; when the doctor prescribes medication that will cause organ damage; when the doctor dismisses you and claims there is nothing wrong with you, there is an alternative: meeting people with similar problems on the Internet and trying to sort out what it is you should do next.
When I was diagnosed with interstitial cystitis in 2012, I soon became hopeless with excruciating pain caused by an “incurable” disease. Despite my skepticism of alternative medicine, I did not have another option, so I began to “collect” healers on the Internet who inspired me to learn more about the relationship between nutrition and autoimmune disease. (It is not officially known for sure that interstitial cystitis is an autoimmune disease, but that is the most prominent theory about the condition.)
Here is a list of healers on the Internet who I highly recommend following. I do not agree with every claim they make, and I do not believe in any miracle elixir, but I do believe in role models and trying to focus on what healing means to you. Thankfully, my interstitial cystitis is much less severe today, and I am able to live mostly free of bladder pain as long as I am careful with what I eat. I could not have found my path without these outstanding individuals, so I wanted to take the time to share them all with you:
Melissa was the first person on the Internet who inspired me, and she is the reason I quit seeing an abusive urologist and started focusing on natural healing. In her YouTube story, she tells about her painful and agonizing experiences with doctors and her focus on healing from IC. In her belief that she could heal herself, she started a radical movement, which led to the Facebook group: Healing Interstitial Cystitis Naturally .
Wendy Cohen is the author of The Better Bladder Book, which is one of the most recommended books on the Healing Interstitial Cystitis Naturally Facebook group. Many people also like the Detox Miracle Sourcebook by Dr. Morse, but I found that to be a little too woo-woo for me. I couldn’t imagine myself living on the top of a mountain and only eating organic citrus for three months, so Wendy Cohen’s approach of eating an anti-inflammatory diet free from gluten and dairy spoke to me much more.
Jessica is a frequent post-er on Healing Interstitial Cystitis Naturally Facebook group, and she shares her journey on YouTube. Many people in the Facebook group consider her among the most influential members because she works hard not only at her own healing but feels compelled to help other people.
Although I personally am not a raw food enthusiast, Sunny perfectly displays the spirit of a fighter. She talks about how people treat her like she is crazy for criticizing the Standard American Diet and for emphasizing that you need to eat differently to heal. Many IC patients seem to be a big fan of Sunny’s work, which is influenced heavily by Dr. Morse.
When I first developed IC, Brittany had not yet found a YouTube presence, but I would have loved to have her videos then. She is so well-rounded and doesn’t preach any one dietary approach. She also believes in the power of nutrition to heal and is a chronic illness survivor herself. People on the Healing Interstitial Cystitis Naturally Facebook group often post her videos to provide support for new members.
I recently stumbled upon the Facebook group Spoonie Superstars, and I love it! Noelle Janka started the group to support her work as a life coach for people with chronic illness and disabilities. Noelle is a chronic illness survivor and knows the extent of suffering that people are going through and the need for someone to understand. Having had many negative experiences with therapists, I can testify to the fact that we need more mental health and life coaches to specialize in chronic illness and disability care.
I might be a bit biased because he is my roommate and one of my favorite people ever. He leans paleo in his approach to healing and has an extensive herbalism background. He has more knowledge about the ingredients in food and how those ingredients are derived than any other person I have ever met.
I am also biased on this choice because she is a former roommate. She is an outstanding herbalist who also works as a doula.
I was very fortunate to find an alternative medicine doctor who accepts my insurance. Dr. Arora agreed with many of the things I had learned about nutrition from the healers above. Dr. Arora was spot on when she told me which supplements to take. My health improved substantially, and I still take many of the supplements that she recommended, though dietary changes were more crucial for me. Members of the Healing Interstitial Cystitis Naturally Facebook group often suggest seeing a naturopath. New members typically ask, What is a naturopath? Basically, a naturopath is a holistic doctor who understands that there is a link between gut health and immune system function.
A Few Disclaimers:
The author of this blog is against weight loss/diet culture/body shaming and has not shared any of this information with the intent to promote weight loss/diet culture/body shaming. The author of this blog would like to acknowledge that financial/class issues as well as other marginalizing experiences may affect the accessibility of following these healer’s advice. The author of this blog is not claiming that all cases of chronic illness can be cured.