How Important To You That Others Believe How Sick You Feel

[NaomiSpellman]

My mother is the only one who believes me. Other people keep asking if I am feeling better, or tell me "You don't look sick!". Many suggest my attitude is the problem, that there is no real illness. I get harassed for bringing a service dog on the bus because, obviously, someone that looks normal can't possibly be disabled. People have yelled at me for this. I left the bus sobbing today after a terrible run-in with the bus driver, who tried to drive off and leave me stranded. I was numb with disbelief afterwards.

[pink1975]

My mother is the only one who believes me. Other people keep asking if I am feeling better, or tell me "You don't look sick!". Many suggest my attitude is the problem, that there is no real illness. I get harassed for bringing a service dog on the bus because, obviously, someone that looks normal can't possibly be disabled. People have yelled at me for this. I left the bus sobbing today after a terrible run-in with the bus driver, who tried to drive off and leave me stranded. I was numb with disbelief afterwards.

I have a friend who while she believes that I feel sick always says "But you look so good!". At least we get to look awesome while feeling so crappy! I have another friend who gives me a look like "yeah right" when I tell her how I feel. I think that it is impossible for people to believe that you are feeling poorly if you look good, that's just the way most of us are taught, sick people LOOK sick. If you are sick, you get thin and pale or lose your hair. Another friend of mine who is young and good looking has Parkinsons. She has a service dog that she brings everywhere. When I first met her, I thought she was just being quirky by bringing the dog along with her everywhere. Turns out, her dog calms her enough that her tremors are almost invisible. Luckily, I am not ignorant enough to have actually said anything about her dog, especially before I had any clue what he did for her. Just try to remember that the people who say stuff to you about your dog are just plain ignorant!

[azmusiclover]

My extended family goes back and forth on "getting it" Like this weekend, they are heading back to their regular home, they winter out here. Yes, of course I want to see them. However, I did just spend 3 days in the hospital (did they visit? No.) It takes me so long to get back on my feet, especially having my special kiddos. By Wednesday it's the harassing when are you driving out here to see us before we go? (an hour and I haven't driven since I passed out because I haven't felt well!) I keep saying, I have to take it day by day. Today I was lucky, I was out of bed before noon!

My husband knows I am sick. He met me during my remission and then watched me decline with the relapse. He was really angry about it for awhile. Taking him with to my Mayo appointments and doing some couples counseling about it really helped. He doesn't always get it to the degree I'd like him to, but I know he tries.

It frustrates me to no end to hear the stories about people being discriminated against because "we look ok" I deal with that all the time with my autistic kiddos. Just because they walk and talk doesn't mean they can't get run over by a car in the parking lot because they can't pay attention! Do people think service animals are free? That they just hand them out for no reason? Here, you need a dog because you look good. UGH.

[blueskies]

Pink, my husband is much like yours.<br /><br />Spinner -- I'm going to remember that. If anyone ever asks me what it's like to have POTS I'm going to say, 'it's about as much fun as dodging sharks.' It cracked me up. Or the next person that asks me what I do all day, I'm going to say, "I've been dodging sharks. You?"<br /><br />I'm so over trying to explain this illness to people who really don't believe in it.<br /><br /><br />I have one sister who is very kind to me and has made an effort to understand this stuff. She has a gastric band surgery about 5years ago to lose weight but things went wrong and she's developed digestive problems much like my pots ones. So she sort of gets that part of my illness and tries to understand the rest. In turn I give her support for her digestive systems problems and try to listen hard when she expresses her fears of maybe needing to have her ankle fused. (She was an athlete and did her ankle in and one operation just made the problem worse). Essentially if they fuse her ankle it means she'll have one leg shorter than the other which will probably lead to all sorts of problems, not the least her gait. Anyway, that sister and my psychiatrist are the only ones who 'get' it.<br /><br />I've been very unhappy over the years, and also bitter as well, that so many of my loved ones choose to believe I'm just not 'really' sick. Now I'm starting to feel like I couldn't care less. I guess at age 57 I am finally learning that I don't give a **** about what other people think of me. I do give a **** about how they treat me and speak to me though. I'm getting pretty bolshie when I answer them now -- although the habit of apologetically explaining the virtually unexplainable to people that aren't really listening anyway is a hard habit to break but I'm finally changing the habit step by step. I no longer beg for their understanding. Which is what I was essentially doing before and getting no real lasting response.<br /><br /><br />blue<br /><br />

[spinner]

I cant believe peoples spouses dont believe them. But im separated and my wife doesnt really believe me.

Does it sound spiteful to say i wish i could give her this for 24 hours?

I suppose people who have never been chronically ill equate the whole thing to a mild bout with a

sinus headache or something.

They have no idea what its like to not be able to move. Poisoning is the only way to describe it really.

[pink1975]

I cant believe peoples spouses dont believe them. But im separated and my wife doesnt really believe me.

Does it sound spiteful to say i wish i could give her this for 24 hours?

I suppose people who have never been chronically ill equate the whole thing to a mild bout with a

sinus headache or something.

They have no idea what its like to not be able to move. Poisoning is the only way to describe it really.

I like your analogy to poisoning, good point. My husband has a cold this week and is whining about how sick he feels. It makes me want to punch him in the mouth! He is unemployed and can lie around and feel sorry for himself when he is not feeling well. I went to work on New Year's Eve with pneumonia! I had just started antibiotics that morning, but I was feeling like ****. No sympathy.

I think that you are not being spiteful for wanting people feel like this for 24 hours. Wishing it on them for a lifetime might be spiteful, but I think 24 hours is reasonable, lol.

[Joann]

Spinner,

I agree with Pink it is not terrible to wish that others could experience what we go thru for a day or two. Just imagine how they would treat us after experiencing this! I always wish the doctors could experience this. Then they wouldn't dismiss us so easily. I have told my family, if one of the doctor's family member was dealing with this they would not have to wait months or years to get help.

[azmusiclover]

When I was pregnant with my daughter and had severe hyperemesis, I tried explaining it to her dad. I told him to imagine the worst hangover he's ever had. The headache, the feeling like you are going to hurl at any movement, any second, no energy etc. Then imagine feeling like that for months. He didn't get it. I left halfway through the pregnancy, cancelled our engagement and everything. Best move I ever made.

In all seriousness, it is so important to have support of loved ones to help cope with a chronic illness. I am so sorry that you are struggling with unsupportive spouses/partners. It's hard when it's something that isn't understood. "Everybody" understands a cancer diagnosis and rallies to support that. But when it's more undefined and you look "healthy" it's challenged. You are an attention seeker, drama queen, mental case, lazy, etc. I have it with the kids autism too. If you'd just discipline them, they are just being bratty, it's just a phase, that's normal, my kid does that too, they talk so the doctor must be wrong, it's just a fad diagnosis. Blah blah blah. Yeah sure, x3 kids? with my history... sure it's a mistake! Thankfully I don't buy into any of that garbage and it has served me well where they are concerned!

I'm sorry some of you aren't getting support from the people you want to get it from. It's not the same, but I support you! This forum supports you. Hugs and hang in there.

[weathermandj]

I feel your pain!! I can totally understand.

It's important that people know how I feel. I look healthy on the outside but am far from it. I will do my hair some days, even if it's difficult to stand up long enough to do it. Sometimes I force myself and then I look nice and people may get the impression that I'm feeling good when I'm not. I am not able to mow the lawn in hot weather and I worry that others will just think I'm lazy when I am really not; I'm just sick, but look healthy.

I get statements like, "You're just depressed" from my grandma and I will say that I'm not because I'm really not depressed (Tramadol is actually helping my depression, even though it's not helping my anxiety), then my grandma will reply back, "Yes you are". It's really really offensive to me that she makes statements like that. It irritates me to no end. That's a big NO NO for someone to say that to someone who is sick. I try to tell her that I'm just sick and it's POTS. She can't understand, for the life of me! I am laying around because I am having POTS symptoms, etc. Then, I have severe anxiety to top that off.

If only people could understand!

I also get what I call POTS attacks and it's similar to a panic attack, but isn't one. I can tell the difference. It irritates me when people tell me I'm having a panic attack when I know that it's a POTS attack. I'm the one experiencing the symptoms and I know the difference. I try to explain but people act like they know how I feel and what it is, when the can't get inside my body and mind to know; it's ignorant thinking and it's frustrating to no end!

I wrote a blog post about this on my blog. Link is in my signature.