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Have You Found Yourself Comparing Your PH To Others?
This week in my column, I approach a topic that I have noticed among many rare disease communities. We must remind ourselves that our PH journey is unique; we are all at different stages. Besides that, our bodies are created for us, which means not all treatments will work for you and me.
I recently found myself comparing to others that have experienced COVID-19, too.
Have you found yourself comparing your PH to others? Did it affect you positively or negatively? Let’s talk about this.
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6 Replies
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Important topic and you did a great job writing about it @jenc. Funny, because my husband and I were just talking about this last week. Every PH and transplant story is different, sometimes even unique in some way to others. There will be similarities but like snowflakes, no story will be an exact match.
Some people live a lifetime with PH, others are sustained by treatment for a few years and sadly, some are never given a chance. It’s the same with transplant.
I think it’s helpful to collect notes about others stories because it helps with awareness. For example, I knew when Cullen’s doctor was going to tell us it was time to list him for transplant before we walked in to the appointment. I knew from what others shared over the years that Cullen was in end stage PH and we were out of options. But there have been a lot of things that haven’t happened to Cullen that has happened to others, and vice versa.
So, comparisons are helpful as long as it isn’t to one up another’s story. I have to say I don’t recall anyone doing this to me and I haven’t witnessed it here on our forums. We have a great group of people here.
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Thank you, @colleensteele. Yes, no comparisons here that I have experienced. I am grateful that we all learn from one another but keep in mind that we are all unique.
You make an important point; some comparisons are helpful and needed for many.
I have seen this in other rare disease communities too, which is sad. We all have enough to deal with besides “keeping score,” perse. Thank you for reading and your continued support.
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Actually that I why I am here. I want to know everyone’s stories and know how they deal with things. I think that you Jen sound like one tough little character and with this PH thing I think we need to gather strength from each other. I know that I am doing pretty good but this last summer and on until now I haven’t been able to get out of the summer slump so I need to know why. I hope that I can share some good luck messages and tell what ever I can that will help out someone or anyone else. Thanks for the opportunity do take part in this. Carol
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@Carol we are happy to have you here. I’ve appreciated your contribution to the forums since you joined. I think another way to put what @jenc is saying is that there is no problem bigger than another. People outside of the PH community sometimes feel guilty when they share their problems with me. They say things like, “But of course my problems can’t compete with what you have gone through.” The thing is, I think whatever someone is going through it feels like it comes in one size, and that is BIG. Occasionally there are people who believe that their health concerns are bigger than others. Sometimes that kind of thinking can interfere with much needed compassion and understand among our PHamily.
Another twist to it is this example. My son had a very close PH friend who ended up listed for transplant about a month after him. She received the call first and she was so upset about that. She believed Cullen was a lot sicker than her and that he should have received the transplant before she did. Sadly, she passed away years ago and my son is 6 years post-transplant. There are a lot of twists and turns with PH and transplant so I think comparisons that aren’t used for educational purposes, are more harmful than good. It just brings people down. Make sense?
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Good topic! And I have to say I don’t compare myself PH or otherwise to anyone else. But I do notice people that do. For example one lady in a FB group said she had to stay inside for 14 days and another lady said oh wow only 14 days! She said she had been inside since March. I just said to myself how silly! Because for one person 14 days might feel like a lifetime to her. It’s not my life and I don’t judge. This is off topic …(sorry) But something that I don’t like anyone to say to me is … oh you poor thing why haven’t you had a lung transplant yet??! First off don’t pity me. I am a strong woman second of all it’s not easy getting new lungs and a heart! If it was easy nobody would be sick! Lol the things people say! ????
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I agree everyone is in their own spot fighting their own battle. I have never been able to talk to anyone with PH so this is all knew to me. Life is what we make it I know that too. And no two people deal with the same problem the same way. I hope that make sense to you. It is great that your son is doing well Colleen and I know what you mean Shannon about transplant. I am not at that point but I have heard a few stories about that subject. I just don’t know what all these changes are that are happening to me and I thought that some of you people might have an idea. I am not comparing myself to anyone I just wanted to know if others had the same thing going on. I hope that I didn’t say something wrong I didn’t mean to I am just chatting is all. If I said something that I shouldn’t have to you Jen I am sorry. I wouldn’t want to hurt anyone’s feelings or say something I shouldn’t have. Carol
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