If you are part of the CF community

We cannot solve our problems with the same thinking we used when we created them.
-- Albert Einstein

My official diagnosis is exactly the same as the name of this site: Atypical Cystic Fibrosis.

I was diagnosed the month before my thirty-sixth birthday at a time when average life expectancy for cystic fibrosis was thirty six. I was diagnosed about a month after I stopped being bedridden when ten weeks of sinusitis turned to pneumonia and this was followed by about three-and-a-half months of sleeping eighteen to twenty hours a day and hardly leaving my bed.

Although no longer bedridden, I was still largely housebound for a long time after that. Like a lot of shut-ins, the internet was my window on the world and it was especially valuable and important to me because people can't give you their germs via internet.

In an effort to understand my new diagnosis and also try to have some kind of social circle, among other things I joined several CF lists. This was a mostly negative experience for me and I eventually left them all and never went back.

I had three genetic tests and they never identified my alleles. It's hardly shocking that someone with an uncommon or lesser known variant of the condition doesn't have any of the most common alleles.

My CF specialist ordered a more comprehensive panel and my insurance company denied the request. I was fighting for my life, the diagnosis was helping me get better, I didn't have the time or energy to fight with my insurance company and didn't think it would matter.

In the CF community, knowing your alleles is a form of "street cred." It was street cred I didn't have, couldn't get and didn't feel really mattered that much.

For some people it was an excuse to attack me, dismiss me, say I was making up my diagnosis and my stories of getting better.

People also vociferously objected to me saying "I have a relatively mild form of CF." "Mild CF" -- aka "mild DEADLY condition" -- didn't sit well with people.

I took Levaquin a couple of times and lots of Zithromax. Someone once told me Levaquin was "a real CF drug" and "the ONLY real CF drug" I had ever taken and since I had only had it a couple of times, I didn't really have CF.

People who, like me, were largely housebound were sometimes very invested in their "standing" on some of these lists and bristled at people liking me. Such people were willing to attack me on any excuse, seemingly out of jealousy.

My mother wanted to be a doctor and delivered babies in her teens and was always reading medical articles. I grew up with more medical literacy than average and had no way of gauging how much other people "should" know about things I thought were common knowledge.

People with a child with CF who didn't have a strong grounding in medical literacy were ill-equipped to understand the things I said and found my comments upsetting and threatening.

CF lists tend to be drama. People on them are typically very ill or are caring for someone very ill or may have had a child die from CF. These are generally not good spaces for calm, reasoned debate of topics that members are very personally invested in, scared of and often inadequately knowledgeable.

I'm not good at lurking. I'm a talker and I get a lot out of engaging with people and so when my experiences with the lists dropped below some threshold of value to me, I left rather than just shut up and read as my means to avoid the drama.

I initially got SOME value out of learning what was "standard" knowledge for the CF community. I also heard anecdotes that supported some of my ideas, such as people saying "Yes, I'm on antacids for my acid reflux and my lungs do worse if I forget to take them or I run out."

One list was a space where people were supposedly trying to find a new drug or a "cure." They routinely posted abstracts of studies and after the late Dr. Andrew Hall Cutler, a man with a PhD in Chemistry, told me "Don't read abstracts. Read the actual study or skip it because abstracts are often poorly written summaries that don't really say the same thing as the study itself." my participation in that list dropped off substantially.

One of the women that was a core member of that group "trying to find a cure" had a child who died at age seventeen of CF. She was a smoker and never stopped smoking.

While I was homeless, she posted something somewhere asking for help with paying a parking ticket in San Diego or something like that and I said I could do that if she sent me the money. So she sent me the money to fix her issue or the issue of her daughter or something and we talked a bit by phone and email.

She briefly was enthused that I was doing so well, said she would do "another paper" about CF and list me as the co-author and then abruptly changed her mind and began dragging me publicly on list. I left the list after that.

Someone whose son died of CF doesn't want to hear that maybe you should have stopped smoking or read the work of someone who got better by being very picky about things LIKE that. They don't want to be exposed to anything that makes them feel like you are telling them "YOU killed your son by not quitting cigarettes."

I never said anything like that to her but I knew that's what the issue was.

If you knew me when I was on some CF list or other, I probably don't remember your name. If you heard people talk trash about me for some reason and chose to let them decide for you what to think of me, well, maybe think about how foolish that is as a policy generally and don't make it my issue. I don't really care.

I never found any friends nor social support in CF land. I mostly was met with a wall of animosity.

While I certainly understand why people with a deadly condition were untrusting of someone they didn't know who had no formal medical credentials talking about eating differently and such, I don't think I deserved the hostility with which I was treated by so many people.

If the info on my blog helps you, cool. But you and I nominally having the same diagnosis of CF doesn't make you and I friends NOW anymore than it did when I was looking for friendship, a social circle and support and mostly got hated on for seeing the problem space differently.

I saw it differently in part because I was diagnosed late in life, so I spent nearly thirty-six years dealing with my defective body with no name for what was wrong with it, so I wasn't being told what other people thought about how my condition worked. I was free for thirty-six years to think about my body without a label and without any people or books or articles telling me "THIS is what we think goes on with people with that label."

So when I finally had "a label for my condition better than hypochondriac," I was more resistant than most people with CF to simply believing whatever doctors and medical articles TOLD ME to think about what was going on with my body.

I also was molested as a child and did therapy in my teens and twenties. This was an exercise in becoming skeptical of the things people say and learning to "believe my eyes over my ears."

It armed me, again, to take a critical eye to things I was being TOLD about CF that didn't make sense to me rather than assume "I'm not a doctor. I must not be smart enough to understand it and that must be why it makes no sense."

See also: Too Little Mucus (NSFW).

I'm not necessarily "smarter than you." I just felt free to ACTUALLY put my brain in gear and THINK about things rather than just take the word of people I thought were "smart" and do as I was told out of fear because CF is deadly and not only does that fact psych a lot of people out but when my son with CF lost five pounds after gaining twenty, his CF team was implying they were going to report me to social services for child abuse if he didn't regain the weight.

I put a big bowl of chocolates and other CRAP on the coffee table, encouraged him to eat and when he gained back 2.5 pounds, they said "Good enough," didn't schedule another appointment and quit acting like the Gestapo trying to find an excuse to send me off to a concentration camp.

We got home, he picked up the bowl, handed it to me and said "We are NEVER doing this again. I feel AWFUL." And we went back to doing the stuff I write about here that was working for him, which unfortunately apparently isn't a LEGAL defense or some shit.

My son was fourteen when he was diagnosed. It wasn't long before he was a legal adult and entitled to say in his own name "They can take this crap and shove it. I ain't doing this no more."

If you have a child with CF, odds are good you never felt free to question medical authority for fear of being accused by a medical professional of medically abusing your child.

I'm sorry the medical system is SUCH SHIT. Please don't take your anger out on me over it.