Not too long ago, I found myself in the waiting room of an alternative medicine practice. I was living with a chronic skin condition known as hidradenitis suppurativa, and the appointment—with a chiropractor who practices natural and alternative health care—was my latest attempt at finding a successful long-term treatment. You might be thinking, “That’s not the type of disease that lends itself to seeing a chiropractor.” To be honest, I thought the same thing at the time. Yet, there I was.
Let’s rewind for a minute: I was diagnosed with hidradenitis suppurativa (HS) five years ago. The condition causes painful abscesses and boils to occur near hair follicles, such as the underarms and groin. The cause of HS is unknown, but it may have to do with hormones, genetics, or an overactive immune system, among other possible reasons, according to the American Academy of Dermatology (AAD).
Unfortunately, it’s one of numerous chronic illnesses that sometimes take years to properly diagnose, in part because the condition can be mistaken for other ailments (like cystic acne), or because people are too embarrassed to discuss the symptoms with their doctor.
I was fortunate that my diagnosis only took a few months, thanks to an urgent care doctor who was familiar with HS and its symptoms. I remember feeling a huge wave of relief that I had a diagnosis. I expected him to prescribe some medication to treat it, and I’d be good as new in a few weeks. Instead, he handed me a brochure and prescribed doxycycline, an antibiotic commonly used to treat and prevent infections. He said the disease has no cure and suggested I follow up with a dermatologist.
Over the past five years, I’ve visited more doctors than I can count on both hands—many of whom had never even heard of HS. I was prescribed so many different antibiotics, none of which helped, at least for any lengthy period of time.
For the first couple of years, I held out hope that there was a magical medication that could treat my symptoms and put me into remission (meaning no active abscesses or boils) for good. But that hope steadily declined as time went on.
I found a great dermatologist a couple years ago who had not only heard of HS but also knew how to treat it. I was eager for some positive results—but it wasn’t as promising as I had hoped.
At that point, the disease had spread from my underarms to my groin area. I had days where I could barely walk or lift my arms. I needed relief so badly. Once I started seeing this dermatologist, I tried everything from spironolactone and metformin (two medications commonly used to treat HS) to adalimumab, which is an immunosuppressive drug that’s the only medication FDA-approved to treat my condition. Some of the medications helped at first, only for their effectiveness to lessen over time. Others didn’t work at all.
I remember a few appointments where I could sense some frustration in my doctor’s voice when a treatment wasn’t working. I knew she was doing everything she could for me, but I just felt so defeated. She mentioned the idea of surgery to remove the entire affected area (when HS is severe enough and deep within the skin, medication might not do the trick, and surgery might be considered, the AAD explains).
But recovery time from the surgery could take weeks depending on the severity, and there was no guarantee that the disease wouldn’t come back. I wasn’t in a place financially to be able to take off weeks of work, and I didn’t want to go through a procedure of this magnitude, only to have my HS return.
I felt like I was running out of options for traditional treatments so I started to look elsewhere—and the spiral began.
Over the last couple years, I started doing research on my own. I read every study that I could find (there are very few available online) in the hopes that I would uncover a clue about a potential treatment.
If anyone on the internet mentioned a product that worked for them, I bought it. My dresser drawers became filled with supplements, like turmeric and zinc; special soaps; tea tree oil; and disposable sweat pads for when my underarms were open wounds and draining fluid and pus.
I joined Facebook groups populated by other people with HS who were also desperate for treatments. I noticed that a lot of people discussed food triggers that they claimed made their symptoms worse, which included everything from sugar, to potatoes, to brewer’s yeast. As a result, I looked into tailored diets, like paleo and autoimmune protocol eating plans.
My desperation got to a point where I was willing to try absolutely anything—no matter what the cost.
I could no longer sleep due to the pain of the abscesses and boils, and I couldn’t raise my arms more than a few inches. But after learning that an acquaintance had success treating some of her health issues using alternative medicine, I decided to make an appointment with a doctor. I was willing to listen to anyone and experiment with unconventional healing methods.
At the appointment, I explained my condition as well as the symptoms I was having. I mentioned how frustrated I was and that I thought certain foods might be triggers. The doctor told me they would like to run a few tests on me. I immediately said yes, half-expecting that those said “tests” would be blood tests.
Instead, the doctor began explaining that muscles in the body could help provide clues about my food sensitivities and intolerances, a process I later learned was a (controversial) diagnostic technique used in the alternative medicine community called applied kinesiology.
This specific method, also referred to as manual muscle testing, uses changes in your muscle strength when you’re exposed to potential allergens to determine whether you’re sensitive to them; the theory is that muscles are weaker when they are close to an allergen. Basically, you hold out your arm parallel to the ground while holding a vial containing whatever substance the practitioner is testing (anything from wheat, to nuts, to a chemical solution) in the other hand. The person performing the test then presses down on your arm, and if it weakens or falls, it’s supposedly a sign that you’re likely sensitive to that food or chemical.
But there’s limited scientific research on applied kinesiology. In one of the more recent double-blind studies on the method, published in the journal Explore in 2014, 51 participants were tested during three trials, and each trial involved a pair of sealed vials (a “toxic” vial and a vial of pure saline). Everyone involved was blind as to which vial contained the toxin, and during each trial, a separate muscle test was given for each vial. The “toxic” vial was correctly guessed in just 53 percent of the 151 trials, which was not statistically significant. Ultimately, the researchers concluded that applied kinesiology isn’t a reliable diagnostic tool “upon which health decisions can be based.”
The Food Allergy Research & Education (FARE) concluded that there is no research to support the use of applied kinesiology in diagnosing food allergies, stating that “muscle ‘weakness’ can be affected by the suggestion or distraction of the person doing the test.” And within the joint allergy diagnostic testing practice parameters issued by the American Academy of Allergy, Asthma and Immunology (AAAAI) and the American College of Allergy, Asthma and Immunology (ACAAI), the organizations listed applied kinesiology as a controversial procedure “for which there is no evidence of diagnostic validity.”
So back to my test: The whole thing happened pretty quickly, but I was so curious to see what came up. My practitioner printed out a list of the foods that were tested and the so-called sensitivities that it revealed. My assessment seemed to suggest that I was sensitive to things like dairy, yeast, sugar, and gluten.
The doctor also recommended I take a variety of supplements that could help my symptoms, including an oral spray (supposedly intended to detox the body of heavy metals) and goldenseal (a plant-based supplement).
At the time, I had no idea what any of the supplements were—but if they were going to help me, I was on board. An hour later, I walked out of there with a medical bill and over $ 200 in supplements.
I remember feeling really doubtful afterward—and also so stupid for purchasing these products and not being more skeptical of the muscle test.
I was even embarrassed to tell my brother and dad (who both work in the STEM field) that I went to this appointment. But despite my misgivings, I still decided to give the prescribed diet regimen the doctor also gave me a chance. The eating plan would help me cut out some less-nutritious foods anyway.
I also decided to take the supplements. I figured they wouldn’t be any worse than the traditional medications I tried, right? I ended up getting a bad headache after taking them, which made my anxiety climb. I didn’t do any research on these supplements, I thought to myself. I just blindly trusted that person—something I normally would never do.
I had a moment of realization that I was potentially harming my body more than helping it, since I had no idea what I was taking or what that alternative treatment actually did, if anything.
I went online to look up any information on the supplements and learned that none of them had good scientific evidence to back up their benefits. “The scientific evidence does not support the use of goldenseal for any health-related purpose,” the National Center for Complementary and Integrative Health explained when I read up on goldenseal, for example.
My own research also revealed that goldenseal does have the potential to interact with other drugs. Seeing as I was currently taking an antidepressant for depression and an immunosuppressive drug for my HS, I knew it was irresponsible of me to take anything that might mess with these meds that were important for both my physical and emotional well-being. Deep down I knew I should err on the side of caution without additional information.
As for the other two supplements, I couldn’t find any information on trusted, credible medical sites to suggest that these supplements were linked to HS.
I felt like an idiot.
For people with chronic conditions that are not well understood, it’s all too easy to go down a rabbit hole desperately trying to find answers and treatments that work. But this doesn’t just add to the frustration of dealing with the condition, it can actually be harmful to your health.
Doing research isn’t necessarily a bad thing. But Gayle Byck, founder and principal advocate of InTune Healthcare Advocates, tells SELF that it’s really easy to become stressed and overwhelmed when you have a chronic illness, which can make it harder to process things or think clearly. “One good strategy is to take the information that you find and show it to someone that you trust who can look at it a bit more objectively,” Byck suggests.
Byck also says that she is not against giving alternative treatments a chance—but that you must approach them with a healthy dose of skepticism. She recommends speaking with your medical provider about any supplements or natural treatments you might want to try. “If you’re someone who wants to explore [alternative treatments], you need to make sure that you’re with a healthcare provider who is also open to [it],” Byck says. “Otherwise, you’re going to clash, and you might not be able to have the most productive discussion.”
I have become exhausted from not only my illness but also from chasing treatments.
I felt like each one that ended up not working caused me to become even more depressed. And the more stressed and defeated I found myself, the worse my flare-ups got.
I wanted so badly to believe that these natural tests and remedies would be the solution to my symptoms. Instead, it just added to the list of treatment options that haven’t worked for me.
I also feel so guilty for spending thousands of dollars over the years to find a cure. Sometimes, I’m unfairly angry with my dermatologist whenever she mentions surgery or tells me that a medication doesn’t seem to be working. And to be honest, I often feel a little bit let down by Western medicine. But I’ve had to accept that getting caught up in experimenting with unproven treatments—especially without consulting my dermatologist, whom I trust—can potentially put my health in jeopardy.
These days, I’m back on adalimumab, which has at least partly helped my symptoms. I’m also struggling with making sure I’m eating enough day to day, because I still worry that any food I put in my body could be a potential trigger. I know that’s not a healthy attitude, and my symptoms won’t have a chance of improving if I don’t nourish my body and take care of it.
I’d be lying if I said I will never again search for new treatments.
But this time, I will ask for a second opinion, do my research, and mention anything I find to my dermatologist to get her opinion.
I will also trust my own instincts and say no if I don’t think that a treatment will benefit me or work with my lifestyle. I have to remind myself everyday that, despite this illness taking over my body, I’m still in control. I’m my biggest advocate.