A Comment That Upset Me.

[jump]

I was talking with my sister recently, who is generally very supportive and understanding about my POTS and always seems to listen and "get it" for the most part. We were talking about malaria, and I was explaining to her that untreated malaria, if it isn't fatal, can result in lifelong malaise. And she said, "Wow, I can't imagine what that would be like, to just kind of feel a little sick every day, can you?"

Um, YES, I can imagine it, because I DO feel a little sick every day!!!!

I was so taken aback I didn't say anything. It made me realize that even though she really tries to be understanding she hasn't really fully taken in what my day-to-day life is like. And here I was thinking I was complaining too much to everyone, but it seems like they haven't even noticed!!

I do feel grateful that she at least is generally supportive, and I feel grateful that my illness isn't worse than it is.... but little comments like this just feel soooooo invalidating, and I worry a lot if I respond to things like this honestly (like if I said, "Yes, I do in fact know what that's like") that people will think I'm being melodramatic or whiny or something. It's kind of like, if I've given them all this information, and they don't understand how sick I feel, then I better not keep reiterating it because they won't really believe me. Does that make any sense at all?

Anyway, I just needed to share that with people who understand these things.

[janiedelite]

Unless someone has been chronically ill themselves, it's practically impossible for them to "get it." My good friend is also my physical therapist that I see once a week and she asked how my leg pain was doing after a treatment. I said I think it's better but it's hard to tell because my feet are burning so much today (from my small fiber neuropathy). She said "are they like that ALL the time?" Duh! I've known her for 3 years and she's a medical person. I talk with her on the phone a couple hours a week. She was one of my main supports last year when my pain got so much worse.

I'm sorry for the disappointment during your interaction with your sister, Jump. It is frustrating when you've put so much effort into communicating your disability and illness. I just don't know if healthy people really have a frame of reference to the extreme modifications we make EVERY DAY in order to live.

Unless they are living it, feeling it, or come home to it every day, healthy people won't get it. They don't have to make constant accomodations for their disabilities, juggle meds or activities, plan simple tasks to the Nth degree... I try not to take it personally, as my hubby (who gets to live with me ) and my mom (who has carcinoid syndrome) DO "get it." And, of course, you guys do too!

We're always here for you!

[Maxine]

I think the only people that really get it, are those that have a chronic illness like ours. I dread getting any type of virus on top of the mess I already have. When I see people get a virus who don't have this disorder, I just wish I could make them understand how devastating it is on our bodies.

When I'm going through a good period, I sometimes have trouble getting it. However, it's been a while since things have been stable----"my normal". Still not great, but good enough to get out of the house.

I had a friend who had severe MS, and she was so kind and understanding about my POTS, and before I got hit hard with my POTS and other illnesses I was one of the few people who tried to understand her illness, but I didn't fully get it.

I think as long as someone tries, and they are still a loyal friend despite your limitations-------then that is a goldmind in itself. It's all about being there.

Right now no one in my family gets it, but my Dad has been pretty decent and tries to understand. My brothers have tried, but sometimes they have been cruel. One of my sister in laws not only thought I was being overly dramatic, but thought my doctors who did get it were quacks. Now my brother's finace has a sister who has been recently diagnosed with ANS issues, and sadly, this has been the one thing that confirms I'm not being overly dramatic in my brother's eyes. However, he has been one of the more understanding ones in the family.

HUGS to YOU,

Maxine :0)

[momofsara]

I know how hard it can be to deal with unfeeling people. Its hard for them to know what you deal with on a daily basis when they are going about living their lives in a "normal" way. If they would only think about how they feel when they are sick with the flu or something, then think about feeling that way all the time maybe they would have an inkling of what its like. I dont think there will ever be a time when people with a chronic illness are truly validated. The general population just doesnt take time or interest in anything that doesnt directly affect them.

OK, I'm off my soapbox now.....

Take care everyone, and above all hang in there

Susan

[firewatcher]

Jump,

As someone with foot IN mouth disease (I often speak before thinking and end up with my foot in my mouth, hip deep!) she may feel awful after thinking about what she said to you 20 seconds after saying it! She may not know how to acknowledge that she goofed! We all get cerebral flatulence and she may have spoken without thinking! To her, you are normal, she sees YOU, not your disability, even if she realizes that you have it! If it bothers you that much, you could try to talk to her about it. She may be squirming and not know how to bring it up! Just a thought.

[ajw4790]

Hi!

Yes, I can totally relate and understand where you are coming from! I think it is crazy sometimes the obvious things that people do not comprehend.

I know that if you don't live that life everyday, it is hard to understand, but I feel that it seems so odd that if you are arounds someone who does live the life of feeling like crud everyday, that at some point you do not become more aware and understanding of that person.

An example I had happen recently. I got into a "heavy" (emotional/hard to discuss) conversation with family members over financial topics, and I was so obviously struggling for the right words for what I wanted to say, and try to get my point across correctly. Even though it took me FOREVER to get thoughts out, and they where so broken up, and for some would be borderline not understandable. Anyways... I said my comment and then the person BLEW UP(figuratively ) on me. I was like what is the deal??? All I was asking for was a minor accomodation to avoid an allergic reaction on a daily basis. Then, I equated it to a peanut allergy, and asked if I were allergic to peanuts wouldn't you help me try to avoid them? How is this different??? Then I got further in the conversation and tried to clarify what I was talking about, and then they were like... well, that is not what you said. Well, it was what I was attempting to say! So, after discussing my one comment for like 30 minutes, they FINALLY understood. But, what REALLY got to me was they were like, "so, why didn't you just say that?". I was just thinking I was TRYING. Then, I said you do realize that with all this my thoughts and how I communicate do not always come easy or out in the best way (especially when I just woke up and was having a rough day! ). Then, the LIGHT WENT ON--- they said oh, that makes sense... I knew you have that problem, but I didn't put that into perspective here. I am thinking... well, it pretty much should be in perspective all the time and you should know that by now.... But, I have to remember for those who are not me, and do not live with this on a daily basis, even things like this are difficult to understand...

It is sooooo FRUSTRATING!!!!!!

[Broken_Shell]

Hi All,

Just agreeing with all the above-said . I think I was a very caring and understanding person before developing dysautonomia, but I still could have never grasped what it would be like to live the life I now have. Unless someone goes through what we experience every day (or suffers from another life-altering chronic illness), I think it is next to impossible to realize what it means to keep fighting through each day and investing all of your energy into just surviving. For us, this is a full-time job, and that concept is difficult for anyone to comprehend.

After years of being sick, I don't even remember what "normal" feels like any more. It seems like when someone first becomes ill, there is a concern for them, but I think that sometimes our family and friends get so used to how we are, that they no longer see how unwell we feel and how much we are struggling each day. However, even as the time that I have been affected by dysautonomia gets longer and my ability to function continues to decrease, how I feel each day and what is happening to me will never be "ok", and it will never stop being scary and disappointing for me. Just because we never feel "good", it doesn't mean that we can still carry on the same as we used to. We all modify and simplify and push ourselves so much each day, and most of that is missed by people whose only concept of illness is as something that lasts for a few days and then goes away.

Thank you all for letting me throw in my few cents worth. I hope that all is as well as can be with everyone.

~ Broken_Shell

[UtahApoc]

One of the worst parts of having an "Invisible Disease" is that people SEE that you look fine and healthy so they do not understand how you really feel.

[gertie]

I don't remember what it feels like to be "normal". After 25 years my family simply does not get it. Because I don't lay in the floor & moan they do not think I'm sick. When they ask me how I am, I just say I'm fine. I know they don't really listen anyway. I listen to their complaints, which seem nothing to me, & know if they had any idea how bad I felt they would not mention their problems to me. I'm not sure anyone really cares how someone else feels but I hope I will always try to sympathize with others problems.

[all4family]

Hi Jump,

I really get what you are saying. I'm sorry you felt unvalidated by your sisters coment. It is so hard to have something that makes you sick, but people can't really see it. I have felt unvalidated for a long time. My family really gets it now, but in the begining they listened to doctors. Maybe she just didn't really think before she said that. I don't think that people get the impact of this disease on our lives. I know I quit telling people how I felt, because everytime I would say something like I'm dizzy, or have a headache I would hear oh I'm dizzy all the time, or I get headaches all the time. And then worse they would proceed to tell me how to get better. Then if I would complain again it is well did you do what I said? If you did you would feel better!!!!!!!!!!uuuurrrrggghhh! So I learned that complaints just get me lectures about why it is my fault that I don't feel good! I hope you can talk to your sister. It means so much to have someone who even gets it just a little. And please let me be the first to say to you, I am so sorry for the pain and sickness you suffer everyday. I think you are very a brave and courageous person to suffer this way, and handle it so very well!!!

Alicia, I just wanted to say that I understand what you are saying about listening to others. I am like the family set of ears. I always have been, but found it to be more so now since I have been sick. I think that being sick makes you a more compassionate understanding person, more sensitive to the pains of others, and people pick up on that. It would be nice if they returned it to you though.

Hugs

Suzy

[morgan617]

Jumping in here late, but the same thing happened with my brother, except he was talking about his wife's neice and how she had this disease called POTS and he could just cry for her, she had such a struggle, etc...you get my point. I was flabbergasted when he said, could you imagine having a life this hard.

I said, "why yes I could, since I TOO have it and have forever and you know it." He was a bit taken aback and then said, well she must have it a lot worse than you, because.......you look so good!!!!! Those oh so famous words.

I guess i just realized some people are never going to get it. We never discuss my health, I refuse. But sure know where you are coming from. And am sorry. morgan