Since this is my first contribution to Patient Worthy, I thought I would spend some time writing about the process it took to receive my diagnosis of idiopathic pulmonary fibrosis (IPF), and how I landed here; writing for a wonderful online community of others who are living with their own trials and tribulations.

As a child, teenager and young adult, I have always had trouble sitting still. I like to be active, and was part of many social and academic committees throughout my school years. This continued after I graduated from my post-graduate degree and even through my Master’s program; I was always apart of committees, professional advocacy groups and held a few Board of Director positions in my personal and professional areas of interest. For as long as I can remember, I was always on the go. This is why it was so bizarre when I began to constantly fall ill with what-I-thought were colds, flus and repeated chest infections a few years ago. I was working in an environment where illness ran rampant, however; it was still very unlike me to be sick so often. I had also just returned home from a trip overseas, so initially I was attributing my illnesses to the recycled air on the plane, and the viruses that might be present in a different country.

I sought out treatment frequently for my illnesses, trying steroids, inhalers, medications and even naturopathic remedies to try and alleviate my dry cough, shortness of breath, chest discomfort and generalized fatigue. All of these worked initially I thought, but within days of stopping the medications, my symptoms would return. In hindsight, now I wonder if they ever were truly eliminated by the use of these medications, but I can’t recall well enough to be decisive on this. Later that same year, I was overseas again and was participating in a tourist-type of activity, which demanded some physical stamina, but nothing I wasn’t prepared to handle.

It was during this climb that I noticed how out of breath I was, and I remember thinking to myself, “this is so unusual, this isn’t even a strenuous climb”. It was in that moment that I decided upon my return home, I would push harder to find out what was really going on with my lungs. The end of that year, after about 9 months of feeling unwell, along with several ER visits for chest x-rays, CT scans and medications, I finally went to an urgent care centre where it was observed that my oxygen saturations were low for someone my age, and I was also tachycardic. This meant that my heart was beating too fast. I was referred to a pulmonary specialist in a city not far from where I live and after another six months, I was diagnosed with IPF.

It was only months later that I learned the signs and symptoms were there for this to be suspected months before there was any mention of an interstitial lung disease. Regardless of this, I am grateful that my diagnosis only took about fourteen months, because per the recent literature, on average it takes people about twenty-six months to be diagnosed with IPF. Then came the hardest part, which was telling my friends and family about my disease, but I will save the specifics of this for another article.

Now that I have come to terms with having a life-threatening and chronic illness as a young adult, it is interesting to look back at the process of getting here. More than anything though, and still despite so much frustration and sadness at times, I like to reflect on the small gifts that have come my way since receiving my diagnosis. These gifts are not in monetary form, nor are they in tangible things; instead they are mostly in the form of social relationships and the ability to connect with others in ways that I never could before my diagnosis.

The online support, as well as the support of family, friends and colleagues has really kept me going and I try to find gratitude in this every day. With that said, I look forward to opening up another door of online support through the Patient Worthy community and look forward to getting to know many of you through our articles and contributions.

If you have anything particular that you would like me to write about, I’d love to hear from you! Until then, take good care of yourselves and one another.

Do you have a rare disease story you want to share? Let us know here.