What It’s Like to Have An Illness That No One Knows About

Idiopathic pulmonary fibrosis (IPF) is a little-known, complex, and misunderstood rare disease. I hadn’t heard of it before my diagnosis at the tender age of 28, just over three years ago. Learning to live with a fatal lung disease as a young adult is one of the hardest things I’ve ever done. It is even more difficult when others have never heard of IPF and can’t understand the implications of the disease.

Because of its obscurity, one might conclude that the incidence of IPF is small. However, around 40,000 people in the United States die from IPF each year, a similar number to deaths from breast cancer. Additionally, a study in the United Kingdom found that incidences of IPF increased by 80 percent from 2000 to 2012.

For those who are thrust into the world of IPF following their diagnosis, it can be a lonely and scary place. However, I can assure you that my world, where I know and love many patients living with IPF, is not a small one. And this disease is not as rare as one might think.

So how can we increase awareness of IPF?

I previously wrote about raising awareness of IPF. The Pulmonary Fibrosis Foundation shared some additional ways to recognize Pulmonary Fibrosis Awareness Month in September. Increased awareness leads to more funding for clinical trials and initiatives toward finding a cure for IPF. It also benefits those who are living with this disease, making them feel less alone.

Here are some of the most challenging aspects of living with a chronic illness that few people know about:

• It feels lonely: If you’ve ever experienced something to which others can’t relate, you may understand the loneliness of living with IPF. Few people understand the symptoms of IPF, such as breathlessness. Many of my friends, family members, and colleagues try hard to empathize, but ultimately they can’t. Living with a terminal lung disease as a young adult can be very lonely. However, I’ve found a lot of comfort and encouragement in online support groups and in the Pulmonary Fibrosis News Forums.
  

• Awareness efforts can feel frustrating: Initiatives such as Pulmonary Fibrosis Awareness Month attract less attention than larger campaigns such as Pink Ribbon for breast cancer. I am not claiming that breast cancer awareness is less important and doesn’t deserve the coverage that it receives every October. However, IPF also warrants recognition. It’s a fatal disease, and its status won’t change until awareness is increased and more research dollars invested to find a cure.

• It can feel exhausting: Aside from the physical exhaustion caused by breathlessness, those with IPF experience other forms of fatigue. Having to continually explain the disease process and how it affects me is exhausting. Sometimes others assume that I’m lazy when I can’t do something and ask for help. When people express curiosity about IPF, I take the opportunity to educate them about it — however, doing so repeatedly can be tiring.

• It can feel fearful: Losing a friend to a lung disease doesn’t get easier, despite its frequent occurrence in my world. These losses bring extreme fear, particularly when the person had the same terminal lung disease as I have. I also worry about catching viruses and bacterial infections. I’ve recently found that common illnesses can quickly become serious and cause permanent lung damage. I am fearful of catching colds and flu and concerned that others don’t seem to fully understand the implications of my getting sick as an IPF patient. While people may know that I am immunocompromised, they don’t always take precautions to stay away from me when they’re sick.

Raising awareness about IPF will help solve some of the challenges I face with living with this little-known chronic illness. Do you share any of these feelings?

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.