Introducing Your Chronic Illness in a New Relationship
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.
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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.
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Comments
Carl T.
I was recently diagnosed with IPF, with a 4-5 year checkout range. OK. I'm already 75 and the last survivor of my immediate Family,so checking out at around 80 is about right for a normal life span. I've had a low spv (forced air volume)for over 30 years,so I have rarely tried to exercise. (run a mile? Climb a wall? Shirley, you jest. Now - Zip line, parachuting, etc. - as easy as falling off a log, as it were. ) AND- now I have an excuse not to shovel snow or mow the lawn ! (There is always good news if you look hard enough). I've looked at all the current medications on the list and their brutal side effects. Right now , I'm not ready to be nauseous, dizzy ,Diarrhetic (sp?) and / or cranky, etc. all the time just to get an extra year or two of gasping for air in some Medicaid nursing home hell. Maybe I'll change my mind later. Maybe not. I know it is an entirely different proposition for folks in their 20's or 30's , with their whole life ahead of them and their Family around them, and my heart goes out to them. My whole life is already mostly in the rear view mirror. But meanwhile , life will go on with adjustments as necessary.
Charlene Marshall
Hi Carl,
Thanks so much for reading my columns and for connecting via the comments. Sorry to hear of your recent IPF diagnosis, but I do like your approach and statement which said, "there is always good news if you look hard enough". This is important to remember for all of us! Thanks so much for sharing a bit of your decision with us re: the medications and your thoughts about taking them or not. They sure can be tough to contend with. Thinking of you as you learn to adjust to your new lifestyle with IPF. Feel free to write us anytime!
Charlene.
Rudolf Ross
Hi Charlene,
I to was diagnosed with IPF last February 2018, as I am now 77 I too think 5 years is not to bad a time to have left. I am going for my second lung test to see how much if any the lungs have deteriorated and with the CT scans the doc will tell me the good/bad news on the 18th. I have told those closest to me but somehow they think it's no big deal or just carry on business as usual. It depressed me how nieve they seem to my plight however, I am quite a free spirit and don't really think about it too much, being single again after my wife's death I am dating elderly ladies close to where I live in Australia so If I move on as the saying goes at this age people would say he has had a good innings (sports term referring to English cricket how long a batsman stayed in playing).
Should I tell the ladies? perhaps but after all, they want a partner to share the loneliness especially at night and at our age if I die it's another statistic. perhaps I should tell them but time will tell.
Charlene Marshall
Hi Rudolf,
Thanks so much for reading my columns and for getting in touch via the comments. I always like hearing from others, although I certainly wish it wasn't this cruel disease that we all had in common. Are you currently seeing your doctor annually then Rudolf if you were diagnosed in Feb 2018 and see him/her this month? I will keep my fingers crossed that your lungs haven't deteriorated too much. Do you feel very different now compared to last year? Some patients notice a significant difference, others say they don't. It is really hard to determine who and when to tell about your diagnosis, isn't it? I've been trying to figure it out and come up with a "blanket" idea of when it is a good time but it seems to depend on every relationship. So, instead of trying to figure it all out in my head, I'm trying to instead just let it happen naturally and when my gut tells me its a good time. Seems to be less mental work for me this way and has worked out well so far. Might this be an approach you take? Hang in there and feel free to write any time. I am glad you joined our forums as well and I look forward to getting to know you a bit more :)
Charlene.
Kathryn Ludwig
Well, I’m 58, was apparently diagnosed in 2016, but was relatively symptom free. The major issue was/is stenosis at various levels in my back. They were going to do surgery, but wanted a chest cat scan prior. I was showing signs of shortness of breath but everyone attributed it to my back hurting so badly. My legs also felt like tree stumps which was also tagged to my back until the Nurse Specialist told me if was from O2 levels in my legs. Received my O2 two days ago and am imitated with it in public, but,I need to breathe! Now I don’t feel “lazy” for not feeling like doing anything AT ALL. I understand it.....working on getting a medication.
Charlene Marshall
Hi Kathryn,
Thanks for reading my columns and for getting in touch via the comments. Wow, your story is very different from others I've heard when getting diagnosed with IPF. It sounds like the lung disease was discovered during the work up for the stenosis in your back? Glad they've prescribed 02 for you, although I completely understand it is difficult to adjust to it. Hopefully it'll help with the pain and heaviness in your legs though, and you're right: we need it to breathe. Hopefully it helps a bit with your energy levels too, it did mine. Are you working on getting one of the two anti-fibrotic meds for IPF? Goodluck and keep us posted on how you're doing. Thanks for sharing!
Charlene.