March 17, 2021 at 10:50 am #16398Jenny LivingstonKeymaster
I’ve been thinking about life expectancy a lot lately. This week, on Instagram, I asked others to share their thoughts about it as well. It’s been interesting to read the different ways our lives have been affected (or not at all affected) by CF life expectancy.
I imagine we all feel differently about it simply because we are all human, but also based on our relationship to CF. Patients, parents, partners… we’re each affected differently by a CF diagnosis and it’s prognosis.
I’d really like to know what the words “life expectancy” mean to you. Have they influenced the choices you’ve made in life? Have they affected you mentally or emotionally? What are your feelings about CF life expectancy?
March 18, 2021 at 2:16 pm #16406Paul met DebbieParticipant
I am so glad you asked this question, Jenny!
I know the common meaning of the words “life expectancy” has to do with an alleged prediction about life time and longevity. However, this must be one of the big misunderstandings that fester in the medical world of CF and in the minds of doctors and patients and their loved ones. This is because they just don’t understand sh*t about statistics.
If any cf patient would ever ask “what is my life expectancy” the only answer should be: that is completely unknown and unknowable. No one can predict the future, and the statistical figure says nothing about a particular patient. NOTHING! It says something about the entire population of patients as a whole, that is all. On average, people with cf die younger than people without cf. That is all you can say. It is not interesting for some specific patient to know this. It is an abstract number that never applies to, and simply can not be used to say anything about a particular patient. This is even more so in the case of CF, because there is an enormous variation between patients in all ways, also in how old they get. It might be interesting for an insurance company, but never for an individual patient. When they say the mean life expectancy in is, say: 50 years old, it is not like every cf patient is going to die on or around their 50th birthday. If that were the case, this number would mean something. But it isn’t. It only means that half of the patients die before 50, and the other half lives longer. And there is an enormous spread: some will die before 15, some will still live well into their 70th. So, practically the number 50 should mean little to any single patient and should be no concern to him or her in advance.
What age a cf patient will reach, does not depend on the ages that all of the other cf patients reached. Only as a group there is some coherence, but individual members are not connected that way. It only depends on all the specific circumstances of this individual patient, many of which will moreover in practice have nothing to do with cf. These circumstances are so complex, that there is no model available to compute this. Even if you look at a very specific sub-situation, the decision to plan the best moment for a lung transplantation for instance, you can see how complex the mathematical model is that tries to give some sort of prediction about that with a considerable margin of uncertainty. And that only regards a timeframe of the next 2 years in the patients life.
Let me illustrate how ridiculous and untrue it is to take the statistical figure and apply it to one patient, say myself. When I was 10, the (not: my!) average statistic mean age at the moment of death of all patients with CF was around 20 years. That means that at that time, half of the known patients died before, and the other half was still alive. Now, presently I am almost 58. I can say with certainty that the probability of me reaching the age of 100 is larger than that of me having died 38 years ago. You see how stupid these figures work out if applied to anything else than the entire group of patients?
Wouldn’t it be wonderful, Jenny, if you read your blog again, now using the knowledge that the statistical figure does not apply to you or any one else as individual patient. Not able to use sentences like “my life expectancy at such and such moment in time was x years”. Not even using the words “my” and “life expectancy” in one sentence, except as in “I can tell you nothing about my life expectancy”. Perhaps finding out yourself that you can’t write a thing about it any more, only in abstract terms that apply to the entire group, that no single patient would be very interested in, not least yourself. You would then have totally dismantled the illusory spell of statistics on your personal situation or on those of other patients. You and they will be freed of the myth “I will live shorter because I have cf”. Not because of trikafta or anything, but because of a clear vision and a better understanding of figures. You should never have been thinking otherwise and I am so sorry for you and all other patients that are or have been in the prison of this misunderstanding, believing in some sort of predetermined early death sentence. It simply is not true.
Remember the saying: there are lies, big lies and statistics. Let’s all agree to never lie again about the life expectancy of any individual cf patient please. Let’s only say the truth from now on: “No one knows”. There is no shame in not knowing. It is as gracious and elegant as the truth can be.
Now for me, the words life expectancy mean: what I expect from life and what life can expect from me. Which is to be completely and utterly and always totally in love with each other and to be present with that continuously. Life and I don’t deserve anything less. They have nothing to do with any number or with time. I learned this early in life from my father, who – being a university-schooled engineer – understood statistics and mathematics and dispelled this myth for me once and for all.
March 22, 2021 at 11:12 am #16417Jenny LivingstonKeymaster
Paul, thanks for these words. Thinking about my childhood, I remember a lot of focus on those numbers. I can distinctly remember specific conversations where things were said like, “she may never go to college, get married, or have children.” At home, there was a noticeable lack of conversation about my future which made me focus so much more on the conversations about what might never be. It was so engrained in me, but you’re right — those numbers have never been about me specifically. I don’t believe kids with CF are spoken to the way we used to be; at least I hope that isn’t the case.
We’ve spoken several times here about breaking away from the stories we’re told (even the ones we tell ourselves sometimes). I believe that’s something I’ll continue working on for the rest of my life. But I hope that the narrative has changed for kids with CF today. I hope they’ll be told stories of hope, success, and triumph instead of the ones many of us were told decades ago.
I appreciate your words so much! Thank you again.
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