The Mighty Logo

Why My New ‘Normal’ With Rare Disease Doesn’t Keep Me From Success

The most helpful emails in health
Browse our free newsletters

I used to think I was “normal.” When I was young, I thought frequent visits to doctors and hospitals were ordinary and routine. I became ill many times due to lung infections and had to be hospitalized, but eventually I surpassed every episode. While in college, I had high hopes I would be living my dream of working in Manila and having a corporate job in human resources.

But, another nasty lung infection forced me to shelve my dreams and to carve out a different life for myself. I moved on, and soon became a college professor. I was planning to finish my graduate thesis and attend a friend’s wedding, when I was struck again by a severe lung infection. I had no choice but to stay behind and recuperate from my illness.

I have a confession to make: I am not “normal.” When I was seven years old, I was diagnosed with Hyper-IGE Syndrome (HIES) or Job syndrome — a rare, genetic disorder characterized by elevated levels of IGE, a type of natural antibody that usually combats bacteria or viruses. The markedly high levels of IGE has made me highly prone to chronic and recurrent infections. It is a lifelong disease with no cure.

I used to think my bouts of illnesses, skin infections and hospitalizations were just episodes, hoping I would outgrow them eventually, the way childhood asthma can be outgrown. Job syndrome is an invisible illness — invisible because it is a disability that is poorly understood, and not physically evident on the patient. It is no wonder I am dismissive of the fact that I have a life-long, chronic illness. I “look normal,” so I believed I was “normal.” And people believed it too. But it’s a ticking time bomb that implodes me, physically, mentally, emotionally and financially.

I am not “normal” health-wise, and I should be OK with that. Despite the health risks and challenges, I have learned how to circumvent my limitations. I once asked a friend to bring a skeleton of a frog in my hospital room, so I can memorize the parts in time for our biology exam. I once checked student papers and wrote my MBA thesis at the hospital. I once went to work and taught a class with a cannula stuck on my arm. For classes I missed, I directed them online, instructing my students what to do with the course requirements. I waited numerous times at the long queue in my doctors’ clinics, waiting with other patients who are in their winter years, while I was in jeans with my backpack, reading a book or listening to music.

Job syndrome did not stop me from living the life that I wanted. I worked hard, focused on my goals, became active and made some friends. I recognized I can still help others while going through my own storms. I learned that I can still carry on. Despite my feelings of despair, loneliness, depression or anxiety, I continue to roll with the punches. Such resilience and tenacity has always been my strength. It has maintained my sense of sanity, while keeping my dreams close to my chest. I know things could have been worse. I am well aware that some people with rare diseases are not as fortunate. I am thankful for the opportunities and privileges I am able to enjoy, such as having a supportive system of family and friends, obtaining a higher education, having a full-time job and the financial capacity to pay for my health needs.

I may not be physically “normal,” as my illness defines me and will pervade every aspect of my life. But I have always moved on, and will always keep carrying on. Like the biblical character Job (whom my condition is named after) was plagued with multiple misfortunes, but whose faith never wavered, I still have my faith and hope intact — the kind that beautifully reveals itself after every desperate time of living in uncertainty and fear. My faith and hope is also kept alive by my family, and a few close friends who are privy to what I am going through.

Three years ago, while still in the process of understanding my relationship with my illness, I had the courage to get a tattoo.

I chose three phrases: Do more. Fear less. Carpe diem.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 27, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home