Relationships make the world go round, and connection with others is an essential part of our human existence. These range from the intimate ties between spouses to the close bonds between parents and children, siblings, and grandparents. Friendships and relationships with co-workers are also important in our lives.
With all of these connections, it can be difficult to figure out when to share the details of a chronic illness. When I was digesting the news that I had idiopathic pulmonary fibrosis (IPF) nearly three years ago, I knew some people in my life could handle the information while others would struggle to accept the diagnosis. Each person’s response was different, so the information I shared about my chronic illness needed to be tailored to each relationship.
Shortly after my diagnosis, I considered who I wanted to tell immediately and who could wait to receive the news. I put people into groups in my mind: one group I knew would cope with the news, and the other would want answers about what it would mean for my future. I chose to delay telling those in the latter group about my disease because I needed time to figure out answers to their questions.
It was hard at first to determine the appropriate timing of when to introduce my chronic illness into my relationships. I think about this often, especially when I hear of those who are newly diagnosed with IPF or when friends receive a diagnosis. There is no ideal time to do this. While you can cushion the blow a little by choosing how much information to disclose, it needs to happen so that others can help you. I approached the difficult disclosures like ripping off a Band-Aid: quick and all at once.
Following are some of the questions I ponder when considering how to tell someone about my IPF:
- Will this person leave me? Let’s face the facts: IPF is a life-threatening lung disease, which means that it will shorten my lifespan if I don’t get a transplant. The idea of this can be too much for some, especially for those who have a fear of death or thanatophobia. Some people don’t want to be in a relationship with someone who will die prematurely. Perhaps it is too painful for them, and so I need to face the real possibility that new acquaintances will end our relationship once I disclose my IPF.
- How much do I share? This question is about finding the balance between sharing too much and too little. My approach mirrors how I tell difficult news to the children in my practice: I give them a few details and follow their lead. Parents often ask me how much information should their child know, and my response is to let them decide this. I use the same approach when determining how much to share about my illness. I tell people a little, and trust that if they want more information, they will ask me. If they don’t ask, their curiosity has been satisfied.
- When is the appropriate time to disclose my illness? This is a tough one and the reality is timing is different for everyone. My advice is to time your disclosure with an appropriate location so the person on the receiving end is in a safe place to express their emotions.
- How do I answer the hard questions? I can never predict what questions I’ll be asked after disclosing my illness. It was too anxiety-provoking for me to think about answers to all of the possible questions, so I opted to focus on doing my best and being authentic. So far so good!
How have you introduced your IPF/PF diagnosis into different relationships? Do you have any tips to share? Join this discussion in our PF forums.
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.