Patients vs Caregivers

[Guest guest]

There is currently a debate going on whether to allow caregivers on the patient site or vice-versa. As the owner of the site and the representative of the Pulmonary Fibrosis Foundation which sponsors this site, I would like to explain the reasoning behind our decision to keep the members separated according to their situation.

Each group has their own set of feelings, fears frustrations,etc. that they must face and work through. A caregiver, no matter how much they read, can never know what it is like to be a patient and vice-versa.

Each patient is different, some dwell on their disease others live their lives as if there was nothing wrong with them and every shade of gray in between. The only way to understand an individual, whether a patient or a caregiver, is to communicate. A patient may not want to discuss his/her thoughts and feelings. He/she may be hiding his/her fears and frustrations for the sake of the family, or some other reason, or maybe he/she just doesn't have any fears or frustrations. This goes for the Caregiver as well.

Bottom line. The board is an On line Support group. Underline Support. We are here to support each other the best way that we can. It's supposed to be a safe place to vent and share stories, concerns, whatever is on your mind. It is not the end all and be all for everyone. If you don't like someone or the way they respond or ??, you can delete and not read them. If you have an issue with someone personally, you can email them personally. Issues can be addressed discreetly off the board.

In the patient poll, people have responded favorably that they would like to include Caregivers. If this is truly how everyone feels, this would mean that we would open the group to everyone. The two groups would be merged. Right now patients are referred to the patient group and caregivers are referred to the caregiver group. We would not just have the few caregivers that are currently on our board. Honestly, I don't want that. I would like to keep the groups as separate as possible. I understand that there may be a caregiver or two who may want to get a different patient perspective or just have a question, but that is extremely hard to moderate. Honestly, I don't think the caregivers would want the patients on their board, but I for one, am not polling them.

I'm as Christian as the next person and I truly want to do what's right for US. This is OUR board. Hence the poll. I'm sorry that it stirred up so many pots. We have so much other "stuff" to deal with and I didn't realize that I stirred up a hornet's nest. I've learned throughout my life that people take things personally. A friend of mine once said, it's because were a person. We're human. We're dealing with a terminal illness on both sides doing the best we can each and every day. Some days are better than others.

But, we will put this behind us and we will be a stronger board because of it. I've been so blessed to have this Board in my life. It has helped me through so many rough times. I've personally met friends I will have for life. I am so blessed. Can we please put this situation behind us and move forward from here?

Leanne

Owner - Breathe Support Groups