Two years ago, over the span of July 26-28 2015, I was laying in bed experiencing the most physical pain I ever had in my life. I couldn’t walk for two days. I’ll spare you most of the gross details, because hidradenitis suppurativa (HS) isn’t a pretty disease (or very common, so don’t be surprised if you haven’t heard of it).
In June 2015, I went to visit my doctor for a physical as the final step in the application process for my visa to move to Spain to study a master’s degree. While examining my body, she noticed a line of acne-like marks and scarring on my skin under my armpit, just next to my braline. She asked me if I got them often and if they were painful. I told her that they started showing up under my arm about 6 months earlier, but I had a few around my groin area on and off over the past four years.
She diagnosed me with hidradenitis suppurativa and said that I could get surgery to lance the boils or take a low dose of antibiotics everyday for the rest of my life.
I balked and couldn’t believe that those were my options. At the time, I wasn’t in much pain and I opted out of both options. I asked her what was causing this— she told me that she didn’t know and that the medical community wasn’t sure.
Fast forward a month later, a month before moving to Spain. I was stressed out of my mind preparing for the biggest move of my entire life. A boil in my groin was almost the size of a golf ball. I missed two days of work to stay in bed because I couldn’t wear pants and I couldn’t move.
I was in so much pain and so incredibly embarrassed that this was happening to me. I did what most doctors tell you not to do: I started searching on the internet to better understand the disease. WebMD told me I was dying, so I figured I was kind-of going to be okay. Turns out that everything I found pointed to something my doctor never told me (and maybe didn’t understand), which was that HS is an autoimmune disease that affects the lymphatic system’s ability to rid my body of toxins (so they erupt through my skin).
Well, what to do?
I couldn’t live like this for the rest of my life… even though HS seems like a life sentence according to many people who have it.
I found out about the AIP (autoimmune protocol for Paleo) diet and learned everything I could in a 24 hour period. AIP subscribes to the idea that your gut health affects your immune system and requires an elimination diet to kick-start healing. All of the books and articles I read told me that surgery and antibiotics actually made HS patients worse.
I immediately decided to cut out everything: sugar (except fruit), artificial sweeteners, nightshades (tomatoes, white potatoes, peppers, tobacco, eggplant), grains, gluten, soy, legumes, processed meats, nuts, eggs, seeds, preservatives, alcohol. What my younger self didn’t realize was that I actually love vegetables after removing sugar from overpowering the taste profile. I also stopped my hormonal birth control pill. Within a week, my anxiety and depression declined substantially and I had lost 10 pounds. By the time I moved to Spain a month later, I had lost 20 pounds. By Christmas 2015, I has dropped from a size US 14/16 to an 8. My mom and sister almost walked past me at the airport when they came to visit because I looked so different. By July 2016, I was a size 4.
In July 2015, I was 220 pounds, the heaviest I had ever been in my life. In July 2016, graduating from my master’s degree, I was 145 pounds. My classmates all joked that I was shrinking each day when I came to class. Many of the ladies in my class joked that they were gaining all of the weight that I lost. I laughed often at this, but what many of them didn’t realize were the sacrifices I had to make in order to even try and feel some semblance of “normalcy.” Everybody has struggles in life; however, people with chronic pain diseases often feel left out and misunderstood.
Cooking exclusively at home was a huge adjustment and incredibly challenging, physically and socially. Until you can’t eat anything on the menus in American restaurants, you don’t realize how much our social interactions as humans revolve around the rituals of eating and drinking. At 22 years old, I immediately felt left out of the social realm of my friends, a challenge I continued to face over the next two years (in Spain, most socializing occurs outside the house at restaurants and bars).
Having to stick to something 100 percent, 24 hours a day, 7 days a week, is exhausting. What people don’t tend to realize is that they “reward” themselves for a long day or week by having dinner with friends or meeting for drinks or even going out to party. By the end of the week, I’m lucky that I haven’t passed out from how heavy dealing with my health is– and trust me, I am 100 percent extroverted so I always want to be around others.
I often had anxiety about other people cooking for me because they might accidentally add in an ingredient I can’t eat. If I didn’t have access to food, then I would forego eating, which wasn’t a healthy choice, whatsoever. I am not proud of those moments, and I do everything I can to avoid them. The autoimmune life requires a lot of planning that makes life feel mundane and burdensome. Dieting is usually the reason why people aren’t successful with their weightloss. I wasn’t even doing this diet for weightless. I had no choice, if I wanted to feel better. Food was my medicine. The weightloss happened to be a silver lining to this otherwise miserable situation.
Even though it was incredibly difficult, I saw success. As the months passed, I had fewer and fewer flare ups, though they never went away entirely. I learned that toxins are stored in fat cells, so as they shrink, they can release more toxins into the body. Overall, my flareups were smaller and for much shorter periods of time. I sometimes was discouraged, but then I remember July 2015 and the pain I experienced then.
I resolved to never let that happen to me ever again.
Sometimes I wonder if I could have avoided all of this mess.
Autoimmune diseases are fascinating. The medical community isn’t decided on what causes the increased pervasiveness across the US. Depending on who you are reading, some may say it’s the industrialized food system that placed the American Standard Diet on a craze against fat and increased consumption of sugar. Others point to stress. Others studies even see a correlation between women who experience childhood trauma and did not receive therapy to address it at a young age are 70 percent more likely to be diagnosed with an autoimmune disease — which could point to a link with stress.
Is it genetic or environmental? Everything I’ve been able to understand about HS is that it’s a bit of both.
I remember when my symptoms started manifesting. I was around 18 years old and was getting acne-like bumps near my groin. My gynecologist told me that it was acne and that I needed to clean more (trust me, cleanliness certainly wasn’t an issue). I was also having terrible digestion issues. My depression and anxiety skyrocketed. At the time, I had just started college and hormonal birth control pills, specifically to address my terrible acne on my face. It was disheartening that all my doctors couldn’t figure out what was wrong with me. Instead of approaching my health from an holistic view, they wanted to treat each symptom individually. As a result, I got progressively sicker over time. Sidenote: don’t worry, not everyone gets an autoimmune disease randomly– you need the genetic predisposition and the environmental triggers.
While my grades never suffered, my body did. My “Freshman 15” was actually a “Sophomore 45” and steadily continued creeping higher and higher. By the time I graduated, I had a terrible self image. I hated my body and never took pictures or looked in the mirror. I cried almost everyday for my first year out of college as my weight continued to rise. I had stretch marks, more boils, and scarring that hurt me both physically and emotionally.
Sometimes I wonder if I would have HS today if I hadn’t started hormonal birth control or if I hadn’t put so much stress on myself to be a straight A college student or if I had continued to push myself to work out (I gave up during sophomore year when I realized that it didn’t matter how much time I spent in the gym, I continued gaining weight because —shocker— I was reacting to many of the foods I was eating).
Though, I try everyday not to get stuck in this “what if” scenario.
Despite the diagnosis and drastic diet and lifestyle change, I moved to Spain without compromising my diet. In fact, the move improved my health significantly because I lived in a city where healthy choices are easier to make (more access to affordable and locally-sourced produce and I walked everywhere). While I still had a significant amount of stress from my master’s degree and living in another country where I knew only one other person, I thrived. The change in my physical appearance was dramatic and I will save that rollercoaster of emotions for another post. More or less, I kept my depression and anxiety under control and I excelled in my program. Last year at graduation, I was the happiest I had ever been in my entire life.
One year ago on July 27, 2016, I returned to the US. Suddenly, I was feeling exhausted all the time and disinterested in doing much. At first, I thought it was because I was tired after giving all of my energy for a year in my program. Turns out that I contracted mononucleosis from a family member upon returning and I ended up in my bed for two months before starting my new job. Over the duration of the past year, I had many ups and downs, steps forward and steps backward. From December 2016 until early July 2017, my depression and anxiety skyrocketed again from a string of unfortunate disappointments, from feeling some professional struggles to over-committing myself to projects that I didn’t find fulfilling to heartbreaks (and in general some adult growing pains).
Throughout the entire process, I stuck with AIP. Sometimes my depression and anxiety increased because I would try a reintroduction and it would fail miserably, causing flare ups and incredible pain. I tried white wine, hoping that I would be able to join happy hours without being the chick that drinks water all the time (at least I am very hydrated!). It failed miserably because my reaction to the sulfites was dramatic, causing boils and headaches for days and days.
Not everything failed, though, and often the success of my reintroductions depends on stress levels and amounts of consumption.
Successful reintros include:
- cacao powder
- 100% pure agave tequila (which is actually used as a digestive aid)
- almond butter
- black pepper
- mustard seed
- mayonnaise (egg-whites)* just started this week and the last time I tried it was not good, so we shall see
Knowing that I am making progress, regardless of how little, keeps me going each day. Over the past 4 weeks, I have been completely free of flare-ups, which is the first time in the past 6 years that I can declare that victory.
If I’ve learned anything in this process, it is the beauty that comes with learning about health and establishing a better relationship with my mind and body. I have no idea what the upcoming year has in store for me. I am about to hit another rough patch of stress as I transition into a new job and in general continue pursuing my dreams (that changed a lot with this diagnosis, also for another post). Sometimes I’m sad that I see no end to AIP and this lifestyle, but then I am reminded of the strength and courage it has taken me to get to where I am. The new rule is one day at a time.
Healing takes an incredible amount of self-discipline.
Healing isn’t linear or cyclical. In my experience, it’s been more of a process that has no geometric shape to metaphorically explain it. It’s better described as a chaotic mess— a mess that has left me healthier than how sick I was before I started the transformation, so it’s been worth every second of sacrifice.
Some of the keys to successful healing include:
- Find somewhere in your heart to love yourself. Nothing will work in this journey until you step back and realize that you can’t control everything, but you can control how much love you give yourself. And you should be giving yourself all of your love.
- Elimination in diet is not enough. We have to supplement with healthy, balanced options. At first all I ate was fruit and my gut quickly taught me that it wasn’t working. Once I learned balance in my macro and micro nutrients, I saw much improvement with my flare ups.
- Control your stress. Know the power of yes and the power of no. There is significant power in knowing your boundaries, when to push them, and when to stay within your comfort zone.
- Plan, plan, plan. As much as it sucks, buckle down and meal plan and prep. It will make your life easier.
- Read and learn as much as you can, but don’t let the wellness community overwhelm you. Take it all with a grain of salt because at the end of the day, even medical professionals continue to make significant breakthroughs in learning about the complexity of the human body.
- What works for someone else may not work for you, but don’t be discouraged. We become science experiments, but scientists don’t give up when their hypothesis is disproven. Try again.
- Have patience with yourself, your family, and your friends. Ask them to be open minded and to support you. Communicate with them when you are having a difficult time or when you need their assistance. If they don’t support you, then they don’t belong in your life (that’s been my philosophy, anyway).
- Blog, journal, do art, photography, throw paint, run, punch the pillow… find a way to get outside of your own mind for a little while.
- Be active. Exercise is incredibly important, even if it’s light stretching each day.
- DON’T WAIT. Start right now, if you haven’t. It is never too late to make this positive change.
Thanks for reading. If you ever need a pep-talk, send me a message. I’m more than happy to help a fellow chronic disease-er (or anyone who needs some encouragement).
PS. I owe a lot of thanks to my family and friends for their support. I would have never been so successful if it weren’t for them.