What is it like living with an autoimmune disease?
So we carry on with Marci’s story. She left off yesterday with, “However, I would soon discover that just because I looked healthy didn’t mean that I necessarily was…”
(SKH Note: A million women can likely identify with this story. The story left me nearly in tears, but the commitment and dedication with nothing but inspiration.)
Living with an Autoimmune Disease
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My rude awakening came Memorial Day weekend of my junior year. I had just returned from a house boating trip, and I was back home at my sorority studying for my upcoming finals. I can distinctly remember sitting at my desk, when out of nowhere my body began to itch. But this wasn’t one of those passing itches that you can relive with a light stroke of the fingers, this was a violent itch that would not let up, no matter how hard I scratched. While I found the sensation odd, I quickly dismissed it, assuming that it was simply the result of having been covered in sweat and dirt for the past four days without access to a shower. I figured a hot soak would sooth my skin, but much to my dismay the itching continued, and I ended up scratching myself to sleep that night.
The next morning, I awoke to find the cause of the previous night’s discomfort. I was covered from head to toe with tiny red patches that resembled a cross between the chicken pox and poison oak. After my initial panic, I began fervently searching the Internet in an attempt to self-diagnose. I came to the conclusion that it was nothing more than a bad case of poison oak and promptly made an appointment at the health center to pick up a treatment.
Fast forward a few weeks. Despite diligently applying a prescription cortisone cream to every little spot that had popped up on my skin, I began to notice that the redness was not subsiding, and in fact, more spots were beginning to appear. At this point, my entire back, chest, stomach, scalp, and shins were covered with what now resembled red lesions. As much as I wanted to deny it, I knew deep down that this was definitely not a case of poison oak and something more serious was going on. I was scheduled to fly home to California in the next few days, so I made a dermatologist appointment for when I arrived to get a more qualified opinion.
The day of that consultation is one that I may never forget. The dermatologist was a callous man whose pathetic bedside manner did not ease my worry. After giving my body the once-over, he matter of factly stated that it looked as though I was suffering from Psoriasis, but a biopsy was needed to be sure. As I sat in that cold, sterile exam room, my mind raced with thoughts of how this disease would impact the rest of my life. I kept asking the doctor questions, hoping that his answers would reassure me. Will I have this forever? Will it get better? Will it get worse? All he could tell me, without a bit of compassion in his voice, was that he had no idea. Each person who develops the condition is affected differently.
When the biopsy results finally arrived, my worst fear was confirmed. I indeed had Psoriasis, a chronic autoimmune disease that attacks the skin. Through my own research and talking with the dermatologist who began treating my condition up in Oregon, I learned that Psoriais is an underlying genetic condition that is often triggered by stress, injury to the skin, or certain infections. While those facts seemed rather black and white, what I couldn’t put my finger on was how and why this happened to me? Sure the rigors of college had me a little stressed, but none of the other triggers applied, and I made such an effort to be SO healthy. I was at a loss, and all I could do was feel sorry for myself. Call me dramatic, but by this point, I was well aware that severe cases of Psoriasis can leave people with either the red lesions like the ones I developed or crusty, scaly plaques that can cover almost every inch of skin on their body. Although my case was not nearly that bad, my mind could only go to the worst possible scenario, and I worried that I would spend the rest of my life having to hide my skin.
The treatments for Psoriasis are many. But it my case, applying a topical steroid cream seemed like the best place to start. I was quickly briefed on the possible side effects that the various drugs can cause, and while it worried me to an extent, my main concern was ridding my body of the lesions that were causing me so much emotional distress. The medication worked well to clear the redness, but it also made the affected skin thin and almost translucent. So rather than have red patches covering my body, I know had white spots all over me, which wasn’t a great alternative. Yet I continued to treat myself with the creams until finally, they all disappeared.
Although my skin was pretty much back to normal, I was definitely not out of the woods when it came to my health. As the years went on, I began suffering from debilitating fatigue, depression, acid reflux, and other gut related issues. I consulted with numerous doctors and had a slew of medical tests run, but was never given a clear cut diagnosis. Just like with psoriasis, I was handed synthetic pharmaceuticals to mask the symptoms. Desperate for relief, I took the drugs, but in the back of my mind I knew there had to be a better way, and I was determined to find one.
As fate would have it, around this time is when I met Sarah. She and I hit it off right away, as we discovered that we were both health nuts who loved learning about exercise and nutrition. We would also come to realize that despite both of our best efforts to become versions of our most vibrant selves, we were suffering from similar health ailments. At the time, Sarah was using alternative methods to heal her body, and I can remember reading about her success working with a nutritionist who focused on more holistic methods. From that point on I made it my mission to take a more natural approach to my lifestyle. Extensive research eventually lead me to discover that many medical conditions are the direct result of poor food choices and other environmental factors. Over time these stressors damage the body and lead to inflammation.
Hippocrates once said thousands of years ago,
All diseases start in the gut.
Looking back on the time leading up to my initial Psoriasis outbreak, I can apply that statement to finally put the pieces together as to why my seemingly healthy body began to attack itself. In an attempt to lose weight, gain muscle, or reach whatever physique goal I was after at the time, I wreaking havoc on my body. It is now clear that what I thought was good for me at the time most definitely was not, especially when it came to my nutrition. While I tried to incorporate healthy foods like lean protein, fruits, and vegetables, I also supplemented my diet with plenty of artificial, processed junk that I justified has healthy because it was sugar-free, low-carb, etc. While living in the sorority, I consumed copious amounts of Egg Beaters, protein powder, Splenda sugar-free Jell-o, Crystal Light, Diet Coke, I Can’t Believe It’s Not Butter and “healthy,” yet processed cereals. What do all of those foods have in common? They are laden with chemicals and other artificial ingredients. On top of that, I was drinking on the weekends, engaging in excessive exercise, and enduring the emotional stressors of college.
I’ve come to the conclusion that the culmination of these factors resulted in me developing a gut. The gut plays a crucial role in managing the immune system, and one that is compromised has been shown cause of various autoimmune diseases and other conditions, such as acid reflux, IBS, depression etc., all of which I have suffered from.
Ok, so I have an autoimmune disease and some other health ailments, but how exactly does that make me a Gutsy Girl? Well for one, going against the societal norm is never easy. We are constantly bombarded with advertisements for pharmaceuticals that lead us to believe that healing comes in the form of a pill. But if you’ve ever read the fine print of a prescription or listened to the end of a drug commercial, then you know that these drugs can pose some serious risks. There is no denying that most drugs work and can provide almost instantaneous relief. I know that if any of my reflux or Psoriasis returns I can easily pop a pill or apply a cream to get relief. While this may be the acceptable solution for some, I am not willing to compromise my health down the road to feel better in the moment. In my mind drugs are simply a band-aid, as the relief of symptoms, does not mean that the body is healed. Symptoms are the body’s way of telling us that something isn’t right, and in order to prevent further damage it is important to get to the root cause of what is causing the discomfort in the first place. It is my belief and experience, that only then can true healing take place.
Defying the theories of conventional doctors and modern medicine by choosing to self-medicate through food and lifestyle changes requires courage. When I decided to take my health into my own hands, I was aware that the road to recovery would be slow, but I also knew the process would be worth it. My first step towards healing was to adopt a modified version of the Paleo Diet. I cut out gluten (buh bye my beloved oat meal) and dairy (so long, protein shakes), which are often the first things to go in elimination type diets, and was thrilled to find that doing so relieved much of my acid reflux and bloating issues. The next step was trying to heal my Psoriasis, which proved a little more difficult.
While I am fortunate that my skin has been 99% clear for years now, I still have one pesky patch on the back of my ear that refuses to heal, and about 6 months ago I developed a rough, red lesion next to my nose. For a while, that spot was quite inflamed and at least once a day, someone would come up to me with a look of disgust, point at the spot and say, “What’s wrong with your face?” While I consider these comments completely rude and unnecessary, at this point in my life I’m secure enough with myself at that it doesn’t bother me. However, that’s not to say that I don’t want it to vanish completely. Not only would it save me from having to explain my condition, but it would also be a good indicator that my gut is completely healed.
For experimentation purposes, I have most recently been using the autoimmune version of the Paleo diet in an effort to clear the lingering spots of Psoriasis. While I’ve always been extremely self-disciplined, there is no denying that this “diet” is tough. The autoimmune protocol eliminates all dairy, gluten, grains, alcohol, eggs, nuts/seeds, and nightshades, as these foods are seen as inflammatory to those suffering from autoimmunity. I have given up some of my very favorite foods that were once a staple in my diet and that takes some serious discipline. Even in the face of societal pressures, when people make snide comments about my food choices and force me to eat just one bite, it’s always been easy for me to avoid indulgences that I know won’t get my to my ultimate goal. But it becomes more difficult now that I must avoid the foods that have been a nutritional staples of an already strict diet. While I honestly enjoy eating healthy, I won’t deny that a diet of only meat, vegetables, avocado, coconut oil, and the occasional sweet potato or squash on workout days gets a little boring after a while. Am I ever tempted to cheat? Sure. Do I often find myself questioning if all this is even worth it, when results are merely anecdotal? You betcha. There are times when I want nothing more than a big bowl of oatmeal, some protein pancakes and a dip into the almond butter jar. But when those feelings and frustrations do arise, I must reflect on how far I have come on this journey to improved health. It is then that I realize that food is simply fuel for my body, and I must be willing to take whatever action is required to ensure that I lead a long, healthy life.
Autoimmunity is a tricky beast, and suppressing its symptoms is no simple feat. Unlike the diets I have been on in the past when my only concern was aesthetics, a diet to cure autoimmune conditions requires 100% strict adherence. Consuming an offending food can reignite the inflammatory process and have you back starting at square one. I am hoping that in time, my extreme discipline will pay off and my gut will heal permanently. If so, then there is a chance that I will once again be able to go back to eating some of the foods that I enjoy and do miss. But until then, I am determined to stay strong and prove to myself that I am gutsy. I have come too far to turn back now, and I look forward to what the future holds for my health.
I urge anyone who is reading this and suffering from health ailments, autoimmune related or not, to take an honest look at your diet. It is amazing what a powerful and healing tool food can be. While change isn’t always easy, I am proof that with a little courage, faith, and discipline you can regain your vitality in a healthy way.