Friends Don't Get It. Frustrating!

[Nervous1]

I recently had a bad, but expected, exaccerbation. Expected becaused I travelled for work and knew I would end up sick afterwards. Knowing it's going to happen though doesn't stop the frustration of dealing with it or the limitations this disease puts on my life.

I had been home sick for about a week when a friend stopped over to visit. In the course of our conversation about every day issues, she mentioned that she is depressed because she has "joined the ranks of the ill and is very depressed about it". .... She went on to say that she has high blood pressure and now has to take 1 pill a day to keep it under control. She also started going on and on about how she does extreme sports almost every weekend and how she felt guilty about taking so much time away from her family while she does it, but that her husband is supportive because they both recognize that as a 50+ year old women she won't always be able to do so.

She stared me straight in the eye almost begging me to comment on this in some way, as I sat there short of breath and coughing my brains out. To top this all off, this woman is a physician and knows all the details of my illness, treatments, etc. We used to do sports together until it became too much for me to keep up with her, and because she would get annoyed if I had to cancel because of exaccerbations. I'm proud of myself that I kept my thoughts to myself and just empathized with her concerns about her illness and her fears for the future.

Inside though I was like ... What the f?!ck! I'm coughing my lungs out and haven't been functioning for over a week because of a business trip. I constantly have to balance between not overdoing things in order to stay healthy, and doing things I love because I can't spend my whole life just staying healthy enough to work and take care of my family. And you're flipping out because you have to take 1 pill a day for a disease that does not affect your day to day life in any way?!!

A day or two later I sent a note to a different friend saying that I wasn't sure yet whether I would be well enough for our group's monthly get together. I got a note back saying, "As usual I have to wish you a get well before our meeting." She was frustrated at my unability to commit.

I know that people mean well, but it's so frustrating!! Thank goodness for this forum. It gives me a place to vent with people who understand. How do you guys handle people like this?

 

[Iamqueenofeverything]

This friend is nt a good friend. when another person can see beyond their nose, they are selfish. usually when people get a long sickness or diagnosised with an illness like cancer, they are sympathic.
i was taught that no matter what i am dealing with in any situation, some else is worse off. your "friend" can't see this. people take more than one pill nowadays.
i have been in your situation. i guess my advice is not to focus on the angry and frustation on these rude people. say a prayer for them when they cross your mind and be polite only when you cross paths focus on the true friends who treat you like royality.

 

[sunshine39656]

I SO understand you! It's annoying beyond words. I constantly have to work to keep everything balanced. I've gotten to where I limit myself around certain people and try to just stay on a "how are you" basis and go on. I've learned which people to basically "stay away from"Of course, those are the very people that want to let you know everything and I usually just try to wrap the conversation up before I explode, and then when my husband and I are alone, I let it rip!!!!! LOL! He's the only one who lives with me and sees what I'm going through and thankfully, has always been supportive.

 

[regina65]

My husband is supportive in some ways, but not in other ways . He has started planning things to do without me .I have good days and bad . I have been sick with this sinus drainage for about a month now . I am finally getting better. He took a trip to friends house over the weekend without me insisted that I stay home , because I was too sick. We have always done everything together. Now he is going to a concert without me , didn't even ask if I wanted to go . Him and his son said they smoked inside the concert which I doubted, but then it was the stairs. I think he is just tired of messing with the treatments and certain things I cant do like be around cigarette smoke and sick people. It kills me how people will go where ever they want to with a cold or even the flu . Oh well I am very stubborn , so I will show him who has to stay home. And people really don't know what a person with CF has to go thru on a daily basis and they don't care either. I have been wearing a mask around everywhere I go like the PCP yesterday to get my flu shot. A lady asked me if I was allergic to someone's perfume in there as to the reason I was wearing a mask. I said no I wish that was the reason. I mean seriously I was coughing my head off because i got hot in the mask . People just don't think. And then the boy at the grocery store asked me if I was sick . I said yes but i am not contagious I have CF and I don't want to catch anything else. Whooping cough and the flu is going around here and mono. So I will be wearing a mask for a while. Thanks for letting me vent .

 

[jshet]

My son has cf and autism. I help to take care of my mother n law who has copd. She is currently in the hospital for not complying with her treatment for like the 6th time in 2 years. She was on a vent and not sure she would come off. It is so frustrating when you have someone who refuses to do the necessary things she needs to do daily because she is too lazy. She does nothing for herself even when well. All she does is sleep, eat and sit in the recliner. It is like we want her to live more than she does. I am so overwhelmed with dealing with her constantly and taking care of my son. He has to do way more treaments in a day than she does. Plus I am having to put off his gj tube surgery because I have to be sure she is taken care of before I do this since my son will be in the hospital for a week and I am not leaving him for a minute.
Nervous1 I so understand your frustration and hurt by the people closest to you not realizing how lucky they have it and should be thankful instead of complaining. Thankfully my son is pretty healthy inspite of everything and going to Childrens Hospital monthly sure puts that in perspective. When you see children that have it so much worse than you or your child, that is a humbling experience. Maybe that is what your friends need is a day of volunteering at a hospital, nursing home or childrens hospital to have their eyes opened and find compassion for others. I wish you well and hope things get better. Thanks for letting me vent too and showing me it is ok to do that sometimes. Janelle

 

[albino15]

I think you have the right to be frustrated but I think you should try and consider that your friend has no idea what it’s like to be labeled with an illness and then have to rely on medication to treat it. I would think it’s the feeling of losing a small amount of her independence, that’s really bothering her. It’s just that maybe you weren’t the best choice for a shoulder to lean on.

Furthermore if we all just say “Well, I shouldn’t complain cause it could always be worse.” It’s as if to say no one has the right to complain about anything ever because “it could always be worse.” I mean you’re sort of complaining about your friend right now and I suppose I could just say “quit complaining cause it’s better to have friends who will come to you for help during life changes, than to have no friends at all.”

Just my two cents.

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[Iamqueenofeverything]

I would never say that, Well, I shouldn’t complain cause it could always be worse, to another because that minimizes someone's pain and frustration. I was taught more or less to be thankful at all times. such as, i am not in the hospital at weeks at a time. or that i am not dependent on oxygen 24/7 etc. a person has every right to vent but when you look at what you can do and realize that you are far better than another person, one may not complain as much and have a more positive attitude.. ie the friend of nervous 1 might say, hey i only have 1 pill as oppuse to 10 pills to take and i don't have to do treatments or go to the hospital so i am ok to take one stupid pill to help me be healthier.

 

[Nervous1]

Thanks everyone for sharing your experiences and thoughts. I'm sorry to hear that so many of you experience similar situations, but on the other hand it's great to be able to vent and share with all of you who sympathize and understand.

What floored me about my particular example is the person who said these things is a physician who daily sees people with serious illnesses, so you can't say that she doesn't fathom what serious illness can do to people. However, without a doubt she is the type of person who only truly is able to empathize once she has experienced something herself. It's not that she doesn't care. She did come over, and she does offer to help with certain kinds of things, but it amazes me how people can say such things sometimes.

As some of you pointed out, I do think that sometimes friends and family .... even those who are close to us ... don't know how to react to us having a chronic illness. It's especially hard since outwardly we don't always look sick, and we have our ups and downs. With those closest to me I do try to be as clear as possible about what I do and don't want in terms of help and support.

 

[bigstar]

I wiill focus on that "It's especially hard since outwardly we don't always look sick"
Im 23 and i have many friends that keep going on, on the phone for hours about their HUGE problems. I have people in my life, that things are going so good for them. Life has been so kind to them. They have everything without even asking. And they keep complaining. "Oh my boyfriend does this and that bla bla bla, oh i dont have a nice job, oh i dont have any money, oh i have the flu bla bla bla." Seriously WHO CARES? They keep nagging. They dont know about my cf so i dont expect anyone to be sympathetic. But im thinking to myself. Everything in their lives is much better than mine. They have the relationships they want, they got money, they got jobs, they have friends that listen. So why cant they see? Why cant they be happy? Im trying so hard every day. Everything i do, everything i have is a result of effort.. You know the feeling. I have my own problems as well. But i never asked for sympathy or pity. And the meds, and the hospital experiences, and the things i know... Ok they made me who i am but i have traumatic experiences. And still i find ways and reasons to be happy. Why are those people so unsatisfied? I guess there's something wrong with them not us.

 

[RayRDT]

I completely understand you.

One New Year's Eve, I think 8 years ago, we were supposed to go to DH's aunt's house for supper. My mother-in-law called and told me I shouldn't come cause lots of the people there were sick, with one having a bad fever. DH agreed and called his aunt and said we were not going. Just a side note : That year, I had had 6 pneumonias and 2 sinusitis'. Well, believe it or not, the aunt/uncle and her son/daughter in law were upset and said that I was exagerating, and they knew I had been pretty sick that year (my little girl also, who was 2 ½ yo) ! I was pissed ! It seems like NO ONE can really understand what we are going through, except you guys. Even some of my good friends are tired of hearing me complain ( I see it in their expression).

RDT.

 

[Nervous1]

That's what's so great about this site. I really value the support from you and everyone else here.

 

[LittleLab4CF]

Travel is hard work. Avoid it if you can. I schlepped my suitcase in flight the equivelent to three round trips to the moon in miles, 12 365 day years in reality spent traveling on business. For the outrageous costs of international travel, I had to make every available hour count. This meant each week had to fit two weeks of work or about 18hour work days. My jet lag would often take two days per time zone crossed to recover. Sick people, stale dry air, gamma radiation to fit a pilot, don't need to say more. Do less

 

[Nervous1]

You're right about the travel without a doubt. My healthiest periods are when I manage to avoid business trips.

Unfortunately they are a part of my job that I can't avoid completely.

 

[CrisDopher]

I have similar experiences. On one hand, I have friends who are courageous, sympathetic, and genuine. I take care not to complain too much about the ins and outs of my disease progression with them, but am quite frank from time to time. In return, they are free to ask honest questions of me and they know that. It's good relationships. On the other hand, I have a few friends who are just constantly complaining about their never-ending streams of viruses, aches, pains, etc. Really just never-freaking-ending. Fortunately, I've distanced myself from seeing these friends too often and have turned off their statuses posting to my Facebook feed. So I don't have to hear it anymore.

More problematic is my family. If there's anybody I need to truly understand what I experience - or at least honestly attempt to understand it - it's my family. Mom does her best and I'll give her credit for that. But she is tainted by her experiences with my father's illness - she can't seem to unlearn what needs to be unlearned to properly address my illness at full face value. And my siblings - they seem to have chosen to wear blinders or are burying their heads in the sand.

 

[bigstar]

Sometimes its good to just shut every one out of our reality. Just those moments that you dont wanna listen anymore. I do this. I say its enough what im going through i cannot handle anyone elses problems or thoughts.

 

[Simba15]

You're right about the travel without a doubt. My healthiest periods are when I manage to avoid business trips.

Unfortunately they are a part of my job that I can't avoid completely.

i lost my job in retaliation for having CF. being sick for a week and probably having health insurance sounds good about now

many people ate self absorbed and selfish beyond belief. Until they personally have faced adversity they have no idea. I stay away from them