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Volunteer Advocate
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How to tell someone about your chronic illness

Talking about your chronic illness to other people is not an easy task. Not only is cystic fibrosis a disease that can be complicated to explain but it is also a personal information that some people can find hard to disclose, especially in certain situations such as work or casual meetups. Hence, we wanted to know the opinion of the members of our community regarding this subject. Here are their answers:

-“ Do explain it in a very basic and factual way and don’t assume they know what it is or know how sick you are. People are very visual so unless they can see that you’re sick, they’ll have trouble believing and understanding it.” – Kim Wood

– “I am an open book. This is who I am. I understand people who decide to keep their life more private but I am actively involved in the CF community so I don’t shy away from spreading awareness.” – Rob Burtch

-“I have always been honest with people about having CF.  Experience has taught me to recognize those who are truly interested in hearing about it or those that are just being polite. For those that are truly interested, and depending on how close I am to this person/people, will determine what I tell them. Honestly, I could talk about CF for days. For those that are just polite, or maybe not so polite, I share a few facts with them to educate them and then reassess. If I feel they want to hear more I am happy to oblige. Of course, there are things that I choose not to tell, even to the people that I am the closest to, as only another person with CF would understand. This is why I feel that having a strong CF community and contact with other CF persons is incredibly important.” – Brenda Chambers-Ivey

-“Growing up I never told anyone I had CF until it became necessary. Teachers knew as I had absences for appointments, and most children don’t pop 10-20 pills per meal! I told my friends that I trusted, so they understood why I had to take breaks or had a stricter schedule than them. But, employers…I’ve learned the hard way to never tell them in an interview. It is critical to get the job, and prove you are capable of the job despite having CF…then when the time is right, try to educate them a little.” – Meaghan MacRury

-“ I don’t think there are any hard and fast rules for this. I find it’s best to just let it come up naturally – they see you take your pills, so you explain what they’re for etc. – and I definitely don’t advocate keeping it secret from the people who matter to you. I really try to normalize it by just talking about it when/if it comes up, regardless of who’s around – it doesn’t have to be some intense conversation, it can be as simple as, “Wow, it’s been really smoky here in BC lately! I have a genetic condition that affects my lungs, so I’ve been finding it really tough. How are you finding it?” Then, if they have questions, they’ll ask, and if they’re uncomfortable, they’ll breeze by it, which is fine, but you’ve demonstrated that you’re open to talking about it.” – Terra Stephenson


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