The way I tackle cystic fibrosis treatments and therapies around my in-laws has changed and grown during my marriage. In the beginning, I hid myself away in seclusion, but lately, I've come out into the open -- a decision that I feel has helped strengthen our relationship and their understanding of life with CF.
Growing up, CF treatments were as much a part of our family routine as homework or piano lessons. No one would bat an eye at the pill bottles on the kitchen table or the freshly sterilized nebulizer cups that littered the counter. My vest lived front and center at the family computer (an enticing way to ensure my compliance). CF was simply part of our norm, and it didn't really occur to me that someday I'd become part of a family where it hadn't been.
When you get married and join a new family, you already feel like the weird one. Add CF into the mix, and it can be a bit much to handle, even at the best of times. I was insecure and vulnerable in a way that I never had been before. I wasn't sure how everyone would react to medical machines and pill bottles, so I avoided it. CF wasn't a topic of conversation, and I didn't invite it to be one.
I was afraid to find out what my new family members knew about CF, and was even more terrified to potentially face their disappointment when they fully understood the realities that may lie ahead.
When my husband and I would visit, I'd stash all of my stuff in a back room, far removed from family activity -- certain, in my own mind, that I would disrupt the hum of normal life if it were anywhere in eyesight. I'd quietly slip away for treatment and let everyone carry on without me. I thought if I wasn't there, they'd be spared from addressing the coughing elephant in the room.
It stayed that way for quite a while, and to be honest, I can't recall that first moment when I left everything out in the open. It's likely that it took place late one Friday evening after hours of travel, when my road-weary self was too tired to care much. While that exact memory is hazy, the day that followed shines in radiant clarity. I was in the middle of hefting everything to the downstairs bedroom when my niece, no older than 7 at the time, came bounding in and asked what I was up to. As I explained that I was moving everything downstairs to be out of the way of everyone, she plopped herself down beside my vest, looked at me thoughtfully, and said, “Well, it wouldn't bother me. Actually, it might be neat to try it. Everyone could see then! It probably wouldn't bother them either.”
And you know what? She was right. I stopped moving all of my medical “baggage” that day, and every day that followed. My niece's words served as the catalyst for where our family is now. Leaving all of my big equipment in plain sight led to questions, dialogue, and understanding. My new family learned which things did what, the time involved in maintaining my health, and why I always seemed to travel with so much stuff. In return, I learned that they wanted to know this aspect of me better and be able to support me through these challenges.
These days, I feel right at home again with my CF, regardless of my surroundings or company. Nebulizer cups reside on the counter once more, and treatment time simply means arranging ourselves so that I'm near an outlet. And as for that coughing elephant in the room? He sits down right beside me, and we make memories with the family that loves us, together.