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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Invisible Suffering

I am so tired of people trivializing how much I suffer. No one gets how severe the POTS attacks are. They are completely incapacitating. I can't stand, sit, or function from them at all. And the sound and light and scent sensitivity, when I flare up are impossible to ever function or work with. And then there's the dizziness and the trouble breathing. I get short of breath because of the POTS. And I'm not even mentioning the fatigue and pain all over. I can't live, work, join anything, do anything while suffering like this. And I still get ignorant idiots that don't understand.

People still tell me I should get out more, join things, get a little job. Get out there in the real world. Don't these idiots realize that if I could do those things, I would be? Would I really need their stupid advice?

Still getting told I should push myself. Oh, you're just not trying hard enough. Yeah, you try having it.

I'm tired of going to doctors who do not understand and do not take my symptoms seriously at all. They trivialize anything I say. I even had one in recent years tell me that he has real sick people coming into his office and what was I doing there. He said it in a real nasty way, too. The entire medical community needs a real overhaul. Do they think it's fun for us to have to go to their offices? I'd rather be dead. I hate going. And there have been times when the visits were not covered by insurance and were a huge financial hardship. And I still got treated like I was an attention seeker or something.

Even my best friend doesn't understand. Every once in awhile, she'll come out with a comment indicating she thinks I can do more than I can. And I really can't.

I'm just sick of people not understanding and trivializing it. I'm severely disabled. I might not look like I am, but I really am. I can rarely ever leave my home. I can't even get my snail mail much. I have to wait days till I feel I can go get it because I'm usually too weak, lightheaded, sick, dizzy to do so.

It's a horrible, isolating, incapacitating disease that steals your entire life. I can rarely ever do anything. But no one sees it because they don't live with me and don't get how bad it really is. And I didn't even talk about the adult autism symptoms I get from it. The aphasia, the audio processing disorder. All of it makes communicating in the real world a million times harder. I am not very functional at all.

And I'm tired of living in a world that refuses to recognize how severe this disease really is.


Hi Carrigon, the worst thing is that if we do have a time we can push through a little, it confirms their view we can do things. They don't see the crash. They don't get how it makes us works for days, weeks, months (or in the case of muscle pain which for me was extreme, decades). I was able to go out with my support shopper three weeks ago. I was out for an hour. After she left I went to bed for an additional seven hours of sleep. She never saw that. Five days later I was still recovering.

When I was studying at university the first time I kept getting told "you look OK", "everybody gets tired" and similar lines. People don't understand because either they do not see us at our worst (alone in a room being very still) or because it doesn't fit their limited view of illness.

In the case of probably most doctors most of the patients they see are probably misdiagnosed depending on what criteria they are using. Most of those are mild patients. Some are moderate. They rarely see severe and almost never see very severe patients. So their view of the disease is over-generalized to that of mild or non-patients. That is then how they treat everyone with ME or CFS.

If doctors can't get it, if their prejudgements and lack of knowledge leads most to be in error, then what chance does the average person have?

There is the question of trust and respect though. Someone close to us should show us the respect we deserve and take it seriously. This is not an attack on the disease when they disrespect us, its a personal attack. They probably do not see that.

Best wishes, Alex
My mother used to do that to me. If I was somehow well enough to cook dinner on one night, she would always be like, why can't you do it every night. Or If I ever managed to take the car out and get to the store, she would always be pushing me to go and get gas, too, or something else. She didn't get it that just making it to the store was all I could do. And she didn't understand that just because I was able to cook the once, didn't mean I could do it again. Especially since when I cook, I'm usually triggering a POTS attack and barely keeping myself from collapsing onto the stove top.

The worst thing she used to do to me was when we moved to a place where we shared the same floor. She suddenly acted like just because we were on the same floor, I should be well enough to help clean and put the groceries away. She didn't get it that I didn't suddenly become well. She refused to ever stay home, no matter how little money we had. She used to take my credit cards and go shopping daily till she destroyed my credit. She would come home with the groceries, wake me out of my sleep, or get me out of bed if I was really sick and laying there and insist I help put it all away. I could barely get up. It was very cruel. I was so much worse when I lived with her. Between that, and the garlic, which triggers POTS. She would cook everything with fresh garlic. And we also had a place where the shower was too hot. Another trigger. I couldn't stand up for more than thirty seconds without feeling like I was going to passout. My brain was fogged up. I was a mess living with her. When I used to tell her the garlic was making me worse, she'd say she didn't believe it.

I'm more functional on my own now, but I still am severely disabled. No matter how much I try to control it, I still get unpredictable POTS attacks. I still can't go out much at all. Still have trouble doing anything. But I'm more functional than I was five years ago.
Yes, there is a society wide presumption - if you can do something then you can DO it. That you can do it one hour and not again for weeks is not something people grasp.
hello carrigon, i understand completley what you are saying and i think alot have went through the same n the different support groups these illness are even harder because they are invisible i get told by my extended family when i see them {mom sister etc} i just need to get out more etc. its so hard...and they make little remarks becuase i cant do what i use to...my mom will say im alot older than you and i do this and taht...thats great but shes not ill like i am...

its so sad the stories of how people get treated with these illness....its like we look normal...we should be normal...therefore we really arent sick or we would look it..its as if these illness cant make as sick as we are we have to be in coma for anyone to acknowledge these illness...

if people like us with these illness go to store, or to a friends..or God forbide for a swim or whatever its like pepole roll their eyes and say "see they are faking"
People with these illness have to shop, have to cook, have to take care of kids..etc.. what people dont see is how much pain and exhaustion we are in doing it and the crash that comes after doing the least little thing...i have been healthy in past for many years, very healthy before being ill i do know the difference..Let someone with an illness that isnt so looked down on do the same things and its like people want to throw them a party for being "brave" enough to get out of the house..its crazy..

my family also asks when i will get a job...if i could work i would...i always did my whole life before i got ill...i loved it...i was very busy very active but i was healthy...as i said i use to be very healthy and i do know the difference in then and now that im ill..i can compare the two first hand...it takes so very much for me to just do basics for my family like getting shopping, and i hurt while im doing it and worse after..but i have no choice i have to push mysefl even on days i shouldnt sometimes...what they dont see is my crying days before because of painic leading up to me getting out of house...or crying after getting back...taking pain and anxiety medications to just be able to bare living day to day...they dont feel the pain and fatigue and crash...i may go for a walk with my daughter once in awhile but they dont know i took morphine just to be able to take that walk...and i use to love to walk and jog....anywhere from 2 to 5 miles a day when i was healthy and thin...so i understand what you mean by if you do something like you said cook one night they expect you to become a chef or something..their expectations are ridiculous..i would bet you didnt even feel like cooking that one night..but you felt for whatever reason you had to or wanted to but it isnt normal to feel so sick while doing what is simple for "normal" people and then to feel sick afterwards..

im sorry your doctor made you feel that way...maybe you can find another better doctor to see...even if its rather far and set up to see only every 3 or 6 months..it took me awhile to find a good doctor i really like she is rather far my hubby takes off every 3 months to drive me to see her...i really wish there were more understanding....i think ive posted about overhearing some people talking really nasty about someone who parked in handicap spot with a sticker..they looked completetly normal but geezeee they had a sticker..so that to be sick..but these people bad mouthed them {not to their face} but i hated hearing it...its stupidity like that..that one cant be ill if they dont look it or if they arent crawling on all fours to get to where they need to...

i dont wish this illness on anyone becuase it is so painful and exhuasting but maybe if someoen famous has it and speaks out about it more understanding will come...ive never heard of an illness that is invisible or not that gets such little understanding as these illness...its just sad
She refused to ever stay home, no matter how little money we had. She used to take my credit cards and go shopping daily till she destroyed my credit.

ohh that is truely horrible. I hate how this illness makes us so vulerable and others then take advantage of us. We often just dont have the energy to be standing up for ourselves.

I'm more functional on my own now, but I still am severely disabled. No matter how much I try to control it, I still get unpredictable POTS attacks. I still can't go out much at all. Still have trouble doing anything.

I think the POTS is one of the most disabling symptoms of ME thou in many ways it isnt as horrible as some of the other symptoms but as far as disabling goes, it is almost completely disabling.

I hate the POTS symptom as unlike the other ME stuff, the POTS strikes so fast. Okay one minute and completely no good the next.

I was out today at specialists when POTS hit.. and I couldnt even get my cane seat unfolded fast enough to sit before I collapsed. (ended up hanging from the surgeries desk for support while another had to get my seat open).

One thing Ive found is people judge those who are living alone as being less ill then those who are living with something. I wonder where they get the stupid idea that those living alone are less ill. Many of us are living alone as we are too sick to be living with others or others make us worst.
Yes :( I reread some of your previous entry too. It's so sad. It makes me so upset, all these horrible things we cope with. Sometimes I'm so upset in an angry way, and then I'm so upset in a sad way, and I can't even decide which way to feel. Such strong feelings.

Some of us don't have much good in our lives either. All I feel I can do is try and have some things that I like doing. A computer game or writing or reading or whatever we are capable of. It's not even close to having a life. We have to spend some time on these little things and try and enjoy. I am depressed, but I enjoy some things.

It's sad but IMO mostly we are better off cutting out people. Since most are incapable of understanding it and they will say hurtful things. I would give people a chance and keep them around if they try, but if they were offensive, I would make myself clearer and clearer. Some people are really dense and forget.
I can relate to all of it too Carrigon. What Alex said is so true too. If you do something once to them it means you must be doing much better now or that you are doing that type of thing all the time. And they don't realize doing something might mean a wekk or two or even months of payback later. I just have given up trying to bother really dealing with those misconceptions. There seems to be little point. But with doctors it's different because their job is to help us with the very problem that they don't even understand or want to understand the severity of.

I'm sorry so many of us deal with these issues. I try to remind myself that people, some of them, do care but it's so far removed from their world that they just don't get it. It still is frustrating though and really creates a bit disconnect between me and those people and I end up feeling more and more removed from them, and probably they from me also.

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