The itch won…
The writing below is a conversation I had with the mother that started the PFIC Italia Network. The foundation that is fighting PFIC, based in Italy. This conversation does an amazing job summing up what we, as PFIC parents go through, and feel when our child has this disease. I hope this blog will inspire others to share their story and stand up to fight the itch and encourage others in the PFIC community.
Me:
I just translated your article and read it. It was very beautiful, you did such a good job. And is that the surgeon who is wearing the shirt?! You are doing such wonderful things with your organization.
Francesca:
I’m not doing anything. I hope one day to have more time and energy
Me:
That is not true! Just because you are not doing anything right now, doesn’t mean you are not doing anything. You are raising awareness and empowering others. You are doing a lot
Francesca:
Do you think? Because I’m feeling really frustrated at the moment.
Me:
Why do you feel frustrated?
Francesca:
Because here a lot of families live with the disease like a shame. It’s like a shame to have a child sick. So I try to push them, to stay close to the community and be proud, but it is really difficult.
Me:
Yes, it is very hard. You can’t push people. Raising a sick child is really hard, and not all parents are willing to do more. All you can do is encourage, and lead by example. And show them how raising a voice will help. You can only do the best you can do. You are passionate, that is a big help. It took 18 years for us to get to this point we are at today. pfic.org was started in 2002. People were very slow to want to do anything. Now there’s me, and you, and Melanie, and the others. It’s more than there ever was who is willing to speak up. You can only push so much. I will support your cause. If you tell me that you need help raising money or awareness for research, or anything else, I will find a way to help you. Please don’t be frustrated, you are doing a really good job.
Francesca:
Maybe it’s being closer to transplant that is making me feel frustrated. I’m very tired, and my nerves are going out, to fight the itch. The itch is killing us. Monday I have my appointment with the psychologist.
Me:
Yes, that is likely it. Just take a step away for a while, that is ok. It is hard to fight for the cause when you feel like you are losing the fight.
Francesca:
Exactly! It’s like I feel now. This itch is so violent, bringing us to transplant. It’s like he (the itch) won. Completely. It’s like he watches us… Smiling… You tried trial, diversion, all the possible medicines. But the itch won.
Me:
Do you like telling your story publicly? Does it help? If you had the opportunity to say that to the world, would you want to?
Francesca:
I do, to all the articles.
Me:
No, I’m talking about our community. To the people who follow all of us. To the doctors, the patients, the advocates, the pharma people…to the people who are already invested in the disease
Francesca:
You mean tell them I’m frustrated cause the itch won?
Me:
Yes. you and me, we can have a call together on zoom and record it. We can just talk, like this. If we decide to, we can make the recording of our conversation public. To tell people why we are fighters, and how we are taken down sometimes.
Francesca:
Yes I think that would help.