Every Thursday when I go on Instagram<, I am greeted with a myriad of baby photos captioned with a #tbt. Throwback Thursday, as it is abbreviated, is a time where a social network sharing the world in the present takes a trip to (in most cases) a nostalgic, happy moment in the past. Last Thursday, though, a very different type of #tbt came across my feed. My cousin, a successful, dedicated, radiant young woman and soon to be college graduate, had posted a photo of herself with a very swollen face. In the caption, she stated, "This is not an attractive #tbt. My face is swollen from being on a high dose of steroids for an extended amount of time. My body was extremely inflamed and my Crohn's disease and psoriatic arthritis were very active."
First, I would like to make a point (or state an opinion, really), that a bodily reaction to an illness, or a physical mark from such an experience does not make someone less attractive. It is, in a way, one's own badge of courage. You have fought, you are fighting, or you have survived the fight. A physical change or a resulting handicap does not make you unattractive, it shows you are a warrior. That is exactly what my cousin is; that is exactly what anyone fighting any sort of illness is: a warrior.
A warrior displays courage, integrity, heart, and passion. Not many people I know would willingly share a photo of themselves at an incredibly difficult (and vulnerable) moment in their lives, but my cousin did, and she did it with courage, integrity, and heart. For it was a risk she took with a passion to make a change that could impact and educate our society on a topic that many know little about, but so many suffer from daily. Autoimmune diseases affect 50 million Americans. Researchers have identified almost one hundred different autoimmune diseases and there are at least 40 more diseases with an autoimmune basis. Autoimmune disease is one of the top 10 leading causes of death in women in all age groups, even female children. They are chronic, they are crippling, and they require a dramatic lifestyle shift that impacts every aspect of daily life.
I, too, was one of the millions of people that had no idea what these diseases were capable of. It wasn't until the summer of 2011 when they would become a reality for someone whom I love, admire, and respect so dearly, my cousin Lilly.
That summer, Lilly woke up one morning with paralyzing joint pain. She was literally incapable of moving. She gained twenty pounds in one week from inflammation and was entirely dependent on her family for support in even the smallest of tasks.
After what seemed like one million visits to the doctor accompanied by the same number of medication trials, she was diagnosed with psoriatic arthritis. Soon after, she returned to school for the fall semester with a compromised immune system and a daily struggle with what should be effortless tasks.
One weekend during that following winter of 2012, Lilly was in and out of the ER three times. At that point, breathing and swallowing were even unfathomable due to the pain they caused. Every test was yielding negative results, though, and each day was ending with more frustration and pain. After admission to the hospital, a twenty five pound rapid weight loss, and a camera study, it was finally revealed that her stomach was infiltrated with bleeding ulcers, leading to the diagnosis of Crohn's disease.
Lilly was an incredibly active young woman, and after that weekend she was bed-ridden for seven months. Even going down the stairs resulted in extreme exhaustion. I had no idea how incapacitating and debilitating this was going to be for her. No one did. No one could foresee how long this road to recovery would truly be. With the help of an incredibly supportive family, and one hell of a dedicated spirit, though, she was able to travel that road.
With the help of a mom who would never take no for an answer from a doctor, a mom who never stopped reading about ways to help and heal her daughter, a mom who cooked meals without sugar, meals without dairy, meals without gluten, a mom who read articles through the night to find a way that her daughter could be happy and healthy with a disease that would be with her for life, Lilly could walk the road to recovery. With the help of a father and siblings and family who supported her endlessly in every endeavor, every apartment move, every awareness campaign, she could walk the road to recovery.
The following year brought a return to school but not without weekly infusions, medication alterations, joint inflammation drainings and appointments. Her body was fighting every medication the doctors presented, but after years of trying and failing, one finally worked better than the rest.
And now we find ourselves in the present. Winter 2015. If you looked at Lilly today, you would never know the hell she has been through. If you look at any person with an autoimmune disease, you often would not. You would never have guessed that her diet needed to be refined sugar-, dairy- and gluten-free. You would never guess that just years ago she could barely walk, move or breathe. Today, Lilly shines brighter than she ever has. That is the thing about an autoimmune disease: it stays with you forever, but if you have the dedication and strength required to fight it, you will be a warrior, and you will win.
Lilly has dedicated and continues to dedicate her life to one mission: live in a way to ensure that someday no one will have to experience what she did. An autoimmune disorder does not disappear, but with the proper lifestyle and treatment you can successfully and happily live a life in remission from crippling pain.
March is autoimmune disease awareness month. Fifty million Americans are living with one of these diseases. Chances are, you know a few. Reach out, educate yourself, allow yourself to recognize the struggle that so many Americans face and help in any way you can. Celiac's Disease, Rheumatoid Arthritis, Crohns, Psoriasis, Type I Diabetes, Grave's Disease, Vitiligo: these are just a few of the over one hundred disorders out there. Sometimes in today's society, it is hard to support a cause without a face. I hope after reading this, you see a face. You see a daughter, a friend, a mother, a brother, a husband -- anyone.
If you are looking for a way to help, or just want to learn more, Lilly has kickstarted a Campaign entitled 50 Cents for 50 Million. If everyone simply donated 50 cents, we could be a whole lot closer to avoiding seven month bed rests and hundreds of failed hospital tests for the 50 million Americans living with these diseases. We could help to find a future where only one or two tests are needed to find one drug, so people do not have to suffer for years without ever receiving an answer or a cure.
To read more about Lilly's story, submit your own story about a journey with an autoimmune disease, educate yourself on all of these diseases, or read more about supporting this cause, you can check out the campaign website here .
If you are suffering from an autoimmune disease and feel alone, or would like lifestyle and recipe suggestions, you can check out Lilly's autoimmune blog that chronicles daily life with an autoimmune disease.
If you are discouraged by years of incapacitating pain, failed diets, failed medications, and failed treatments, do not forget this: you are a warrior. You live every day fighting for immunity. This March, let's all fight, too. Let's fight for immunity. For fifty million Americans, we will.