The opportunity to allow people think I’m using cystic fibrosis as a crutch is the main reason I don’t let people into that area of my life too early. I discussed the topic of when to tell others a while back, and while I have decreased my incubation period significantly since starting this site, the principle remains in effect for a large part.
The words found below do not apply to CFers who are home-bound, hospital-bound, or confined to their bed until a transplant donor can be found. They have our utmost respect and compassion. I will be very thorough in my explanations to avoid any ill feelings, as this is a reflective, introspective topic for discussion.
I have lived two separate lives, each of which has been made up of various compartments. I believe that compartments are a highly effective method of coping and thriving with a chronic disease that can not only cause suffering conditions, but death at a progressive rate from normal life-expectancy averages. Before I move on, I want to be clear about this point as well: suffering conditions does not mean that each CFer is forced to live a life of suffering, as we discussed recently . If you’re too busy to read it now, the summary sentence is: “we don’t suffer from CF, we thrive despite it.”
It wasn’t much more than a year ago that I didn’t “have” CF. That life consisted of two CF-related compartments
These would be situations ranging from just living life to trying to impress this really hot chick enough to see if she might considering marrying me. In those cases, I could do anything. I had a tough, outdoor job that required heavy lifting (lots of heavy lifting) of dirty, manly objects made out of wood, dirt, steel, and concrete. I also got to play with mud and grease a lot.
I would do pretty rigorous sports, give of my time and energy until it eventually made me sick, and completely normal, if not epic (although quite short and thin), in the eyes of someone who didn’t know I had CF.
Everywhere I was, at some point people had to find out I had CF because I’d need to go to clinic on a Friday or several sinus appointments. Then there were the rare times I’d land in the hospital or the more frequent times I’d miss a day in the ER with a blockage or waiting at home for home IVs to arrive. In every situation, it was fine. Besides, it’s a protected issue as far as employment is concerned. If I missed work, I made up my time or at the least didn’t get paid, so as long as the work got done it was all good.
There were also times in everyday life that someone would ask something physical of me, but I was either afraid or embarrassed at the potential for a major coughing spasm or a bleeder. My normal defense mechanism was to bow out due to my tricky back that would send me into bad places of pain. Some people thought that I always had a cold while others knew I had CF and saw through the excuse as a crutch to avoid physical exertion.
Understand, though, there are times that you should let others do for you. Beautiful’s dad came over one day around New Year’s and pressure-washed our entryway, sidewalk, and driveway because my clinic are adamant against CFers doing that because of mold and bacteria. On our moving day, I had to pitch in, but realize my limits and let some of our larger, healthier friends do some of the objects. My bro-in-law loves to lift heavy things – I hear he works out (/wink).
It doesn’t get much more “out there” than making a site and publishing hundreds of personal articles about your life… with photos of you everywhere… and then posting the links on Facebook, but still:
Like I discussed in more detail about timing, I don’t make it a point to tell every client that I have CF and sure as heck don’t tell them when we are in the “prospective phase” of our dealings. Doing so would leave myself open to misconceptions, prejudice, and pity. None of those are things that I want brought into my business. After meeting the needs of my clients, I just want understanding, respect, and an ongoing relationship that fosters an environment of mutual benefit built on trust. I am telling more and more clients, but I never use my CF as a way of getting a job in a “c’mon, help me out with my expensive health insurance and bills.” The most I ever ask for is understanding when I have to lay down or take time to go to the doctor or recover from sinus surgery.
We were in a small group of people our age from church for two years after we got married. I don’t think I ever came out and just said, “I have CF.” Some people knew because we grew up together. Others knew because I’m sure my parents or their parents had told them at some point. I wanted the group we are in now to be different. I think I waited 2-3 months for us to get to know each other pretty well, even eating meals together, which requires me to take my Zenpep enzymes.
I showed my paper on when to tell others about CF to one of the guys who happens to be an AP English teacher at a private school as my way of telling him. I think that was a super-neat way of telling him, and then we got to talk on a deeper level about it since he knew so much more than before that. I made a more specific announcement soon after, but some people may have been gone that night. Now I’m sure everyone knows with everything that’s gone on in the last year and no one really treats me any differently.