Guilt. I know I talked a little bit about it in the book but I wanted to revisit it. I may repeat myself, ok I know I will just go with it. haha
As someone with CF you feel guilty for your life (sickness/disease) taking time away from others. I will speak for myself, I feel bad when someone has to stop what they are doing (everyday life) and do something for me that is due to CF or CF related. For instance when people come see me when I am in the hospital I feel bad for them squeezing that in their busy day. I never want to be a burden on people. I never want people to feel sorry for me. I never want people to stick around because they feel bad for me. I never want people’s lives to stop when mine has too. I want people to continue on with their normal everyday life. I have no choice in the matter, my life has to be put on hold from time to time. Others have the choice. Don’t get me wrong I am so thankful when people are able to do things to help me out when I am in the hospital like making sure my bonus son is taken to all his activities when my husband is unable. I appreciate everything everyone does for me and my family with all my heart, it is just hard to accept needing help. I am a very independent person and really dislike it when I am not able to do things for myself. I have had to learn to allow people to do things for me which is very hard for me.
People with the disease often feel guilty/bad that they put a wrench in normal everyday life. It is hard for us to let go of the control and let people do things for us. However there are people who don’t mind and actually prefer others to do things for them so they don’t have to worry about them. We want nothing more than to never need anyone’s help but have to come to the realization that we do or will. We hate that people are uncomfortable around us and feel like they don’t know what to say. Say just that, “I don’t know what to say.” We will take the lead, don’t worry. We don’t have all the answers by any means but we don’t want to fight the fight alone just because you are afraid of saying the wrong thing. Family relationships and friendships mean everything. It is nice to not think about CF (or whatever other disease it may be) all the time. It is great to just be “normal,” there that word is again. It is great to do normal, goofy, silly, fun things. Yes a coughing attack may happen but we press on…hahaha.
Now onto another type of guilt, Survivors guilt. My friend wrote on this and I thought it was great so I thought I would share a bit as well. The CF community has an “it’s a small world after all,” kind of feel in the sense that you find that you know the same people with CF as other CFers but they may not know each other, yet. You may not know them in person or even had any contact with them via internet (Facebook, blogs, email, etc.) but you know of them through others. With all that said, when a CFers hears of another CFer passing away it is hard. It is hard because they have the same disease that you do and you are fighting the same fight that they just lost. It is hard for us CFers to talk to the family of CFer that passed away because we don’t want to “rub it in” that you are still alive and their loved one is not. I have lost many friends and acquaintances over the years. Everyone’s CF is different and not a single one can compare to another. It is natural to feel bad for still being around when others didn’t have the chance. With all that said, I would not change being close to my CF friends for fear of losing them. I am thankful for every moment I get with them. I am thankful for the bond we have, it is like no other.
Guilt or feeling bad come with the territory when you have a disease. It is just another life dynamic.