• Trikafta guilt

    Posted by jenny-livingston on February 3, 2020 at 7:21 pm

    I’ve talked before about the guilt I feel for having access to a “miracle drug” (Trikafta) when others, including some of my very good friends, don’t. Whether it’s due to genetics, geography or insurance issues, I feel deeply for those who are watching from a distance — seeing others benefit from a drug they’re unable to take.

    It causes some complex emotions. As I’ve started experiencing some benefits myself, I haven’t known if sharing them is the right thing to do. I’m generally an open book. Too open at times, if you ask my partner. But it’s difficult for me to share my successes when I know others don’t have the same opportunities. Why am I experiencing so much guilt and inner conflict?

    If you’re on Trikafta, do you ever feel guilty for having access when others don’t? If you’ve benefitted from Trikafta, do you feel comfortable sharing that success openly?

    And if you’re someone who is unable to take it, how do you feel about hearing these stories? Do you enjoy them, or are they painful to hear?

    I’d really like to know what you think!

    jenny-livingston replied 4 years, 2 months ago 2 Members · 2 Replies
  • 2 Replies
  • paul-met-debbie

    February 5, 2020 at 10:13 am

    Well, there is no way of knowing what to think of developments like this on a larger scope.

    There is an old story of a farmer who’s only horse ran away. The neighbors came to him and told him how unlucky he was. But he said: “perhaps”. The next day, the horse came back and was followed by 4 other fine horses. The neighbors came to him and told him how lucky he was. But he said: “perhaps”. His son tried to tame one of the new horses and was thrown of and broke his leg. The neighbors again told the man how unlucky they were, and again he only said: “perhaps”. The following month, army officers came to draft young men to fight in a war, but the son was not eligible because of his broken leg and could stay home. And of course, the neighbors thought he was very lucky, but the farmer only repeated: “perhaps”.

    This shows we have no way of knowing what is good or bad for us. So, if someone tells me he/she is on Trikafta and feels so lucky, my honest reaction to that is: “perhaps”. This is not to say that I don’t care, but I honestly would not know how to react to that, besides like in a neutral way like “aha” or “mmm”. Besides, these are experimental drugs that only work for some patients in some ways. Long term evaluation is not available. Side-effects have yet to be fully determined. Of course, it is an interesting development and it might be a breakthrough, which would be great (perhaps). But right now, we just don’t know. It could take years to make an honest assessment of this drug and the other in the vertex-family. By that time, they probably don’t exist anymore and they have been followed up by other ones.

    But anyway, don’t feel guilty, that is a destructive emotion. And you actually don’t know what to feel guilty about. I have no access (yet) to Trikafta, but I have no problems at all hearing from those who have. Both the good and the bad experiences. How it influences their health and their lives. It’s informative. I wish them all the best. So keep it coming and don’t hold back.

    “perhaps” Paul

  • jenny-livingston

    February 5, 2020 at 1:58 pm

    @jpaul I really love this response! Guilt is one of the emotions I struggle with most, and I am constantly reminded that it serves no real purpose, but it is still so hard to shake. I think I’ll start using “perhaps” a lot more frequently…

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