A Year After My Diagnosis
As a medical student, you spend most of your time reading about all these rare diseases and learning how to recognize them on test days, and later on in future patients. The reality is that not all diseases show as clearly as the book says. I remember reading about ankylosing spondylitis for the first time (months before my diagnosis) and thinking "Ok, the spondyloarthritis with the complicated name is the one with sacroiliac pain seen mostly in males and also causes the bamboo spine…I don't think I need to learn more about it, this seems to be uncommon."
Funny thing is, by that time I was already having what I referred to as hip pain, which was really sacroiliac pain. Since this pain concurred with my period, I did not associate it with anything else. It wasn't until the pain, and discomfort became constant that I started to worry. How can it be that a 25-year-old is limping after just laying down and waking up at night due to pain? After visiting an orthopedic doctor who ruled out any musculoskeletal cause of pain, I was referred to a rheumatologist.
I thought I had osteoarthritis
Terrified, I went to my rheumatologist hoping that I could find the answers to all these symptoms. She started asking me questions about my pain and my professional career. After letting her know that I was a medical student she continued with the following questions: "What diagnosis do you think you have?" I told her something like, "Well, I have sacroiliac pain that is worse in the morning, which is a typical sign of AS but hey, I'm not a male and I don't think I have a bamboo spine so I can't have it…maybe early osteoarthritis which is a more common diagnosis? But clearly not AS."
She laughed and told me that she was suspecting AS. After more lab tests and an MRI, the rheumatologist confirmed my diagnosis. Last March between all the chaos of the COVID-19 pandemic (as if we weren't going through enough) I received this life-changing news. Thankfully, I got my diagnosis in less than two months. Now my pain is mostly under control with Humira.
It was overwhelming, but I refocused
Being diagnosed with a chronic disease at an early age can put you in a pretty bad place, thinking the worst about the economic burden, relationships, family plans, etc. can be very overwhelming. Once I stepped back and appreciated all the support from family and friends through all this process it made me realize that I was not alone and that I was so much more than this diagnosis.
It has been a year since my diagnosis. Looking back now, with all the ups and downs of AS, I have realized how much I've grown since then. While currently doing my clinical rotations I get to spend time with patients who are receiving new diagnoses or are living with chronic diseases. I can see myself in them and feel strong enough to talk to them and provide comfort through the process.
AS has changed me
Having AS has changed the way I see life, my career in medicine, and my patients. It has given me the opportunity to bond easily with patients living with chronic diseases. When they tell me about the pain and fatigue they struggle with, I can look them in the eye and tell them that I understand what they are going through and genuinely mean it. I truly believe that it is in these adversities of life that you get stronger and somehow having AS has become part of my training in becoming a more empathic, resilient, and caring physician.
Do you use the word disability to describe your AS?