Hello everyone! I am so excited that you have ventured onto the wonderful Bella Soul Website. My name is Natalie Atchison and I am currently a senior at the University of WI-Madison studying Sociology and Gender and Women’s Studies. After this year, I plan to enroll in a PhD program in Sociology. I want to be able to teach at the college level and conduct research within the field. My motivation, strength, and passion for life have largely come from my history of living with chronic illnesses, which I will speak a little about today.
I was born with a Ventricular Septal Defect (VSD) and at the age of 18 months I was diagnosed with Juvenile Rheumatoid Arthritis (JRA). I was routinely having trouble walking and pulling myself up in my crib, when one morning my mom noticed that my knee was incredibly inflamed. My family and loved ones were shocked that JRA was my diagnosis because the disease is stigmatized as an elderly disease. However, the reality is that nearly 300,000 children are affected by pediatric arthritis and other rheumatologic conditions. My arthritis began solely in my right knee, but currently affects almost every joint in my body. I developed arthritis in my jaw that is commonly shortened into being called TMJ. This caused my jawbone to partially deteriorate. When I turned nine years old I began receiving IV infusions to attempt to slow down my symptoms and also attempt to help grow my jawbone back to “normal”. I would go into the hospital about every three weeks for 6-hour intervals to receive treatment.
Throughout this time I was also having other symptoms that several doctors were unsure of how to diagnose. Some of the mysterious symptoms included: having anywhere from 20-30 “canker sores” in my mouth at one time, my legs, feet, hands and arms staying numb and have a tingling sensation. I was hospitalized for migraines, and my arthritis pain continued although I was on the “right” treatment. I was also having unsolvable stomach issues. None of these symptoms were common for arthritis patients so I jumped from doctor to doctor to attempt to find out what was going on in my body. I think I cycled about 15 doctors before I finally got the diagnosis of Behcet’s Disease. Behcet’s Disease is an extremely rare disease that causes inflammation of blood vessels throughout the body. Because there are so many different elements to Behcet’s disease there is no specific way to diagnose it. The disease consists of multiple different elements and symptoms so it is commonly misdiagnosed into a variety of separate diseases (i.e. arthritis, vasculitis, neuropathy…).
The Behcet’s symptoms affect me the most include Arthritis, ocular problems, gastrointestinal problems, nervous system symptoms, mouth (and other) ulcers, and extreme fatigue. My ocular problems cause me to lose my vision and cause my eyes to become painful during flare-ups. Many people become blind from this disease as it progresses, but we are unable to predict what is in my future.
Strangely enough, Behcet’s Disease is most common in the Middle East region, affecting mostly males over the age of 30. I however was diagnosed at age 13, and am a female with Scandinavian roots. Because this is such an abnormal disease doctors have constantly told me that my body was so strange and different. No one was ever sure what to do with my condition at this point in my life, causing it to be a pretty dark time. I was pushed from doctor to doctor because when one of them was unsure of how to treat me, they would refer me to someone else. This made it feel like I was a test subject. Doctors were consistently testing drugs on me to see what type of reaction I received, took my blood multiple times a week and would observe my body for constant changes. At age 13 I developed a severe eating disorder, depression, and anxiety. I finally went to inpatient treatment for this when I was 19. It was difficult for me to accept my body and be optimistic about my future when the professionals I would go to for answers would tell me they were “unsure of what to do with me.” As a child when the “big, official doctors” continually explained, “your body is just not normal” it was difficult to think positively about myself. However, after going to inpatient treatment for my eating disorder, depression, and anxiety my life began to change and I started seeing the positive sides of living with a chronic illness.
Even though I have gone through things that “normal” children never have had to experience, I would not change the different experiences my journey has taken me through. Being able to find the strength in myself to cope and handle my diseases, has empowered me to become the person I am today. Yes, there are days when I would wish my pain would disappear or times when I wish it wouldn’t be painful for me to walk to class. Also, there are days when I have wanted to eliminate the numbness in my hands and feet or be able to go out with my friends when I am flaring. However, above all of the negatives there are so many positives that have come from my illnesses. I have met the most wonderful people with the largest hearts who, like me, struggle with a disease everyday. I have learned how to manage loads of schoolwork while sitting through treatment, which has allowed me to push myself to the highest level of achievement.
When someone hears that I have diseases, I often hear the comment, “but you are so normal!” and “you look so healthy!” I have realized that the ideal of “normal” does not exist. Every person on this earth has their own struggles that they are forced to face everyday. There are so many bumps in the road, but I do believe it leads us all to that place where we are supposed to be. Some people are so quick to judge others based on looks, opinions, and views but if we could all embrace our differences, each one of us in this world would become less stigmatized making it a happier place for so many.
I am blessed to have such a supportive family and set of friends to help me get through my struggles. My parents are superheroes for helping inspire and support me throughout my entire life from taking off countless days of work to drag me to doctor visits, to being there during my sickest moments. I would not be where I am today, graduating college (CRAZY) without the help of others to encourage me that it is worth fighting for what you want. You cannot let your struggles and illnesses define you. This is so difficult but so fulfilling when you embrace all life has to offer. I may have to take 20 pills a day, sleep more than all of my friends and live a more conscious life, but that is what makes me unique. I have large moments where I become incredibly frustrated at the hand I have been dealt. However, I do believe that in order to see the greatness that life has to offer, you have to go through the bad times to actually see the greatness. We are all unique in our own separate ways; you just have to learn to embrace this quirky life we live in. Remember…live strong
1 Comment
Maureen Atchison
April 29, 2014 at 4:23 amI hope your website flourishes. Everyone’s stories are amazing, and can’t but make others feel less afraid.
Natalie you are such an amazing young lady. You never ceased to amaze me with all you do, in spite of the cards you were dealt!
I love you!
Mom