Your Most Misunderstood Symptom
I missed rare disease day, but what of your symptoms is the most misunderstood or the most difficult to explain to others?
For me, explaining all the different types of fatigue I feel is hard, as there aren't really words in the language that differentiate between them.
Even worse than that though is when I feel sick in various parts of my body. It's more than just fatigue, but it's not always pain. It's different than paraesthesia. Just as one's stomach can feel unwell when nauseated, various parts of my body, especially muscles often just feel unwell.
@AffyAvo Manic talking.
I have to deal with some faily stupid people with stigma and a limited attention span. I am an engineer and frenquently they ask me to fix things for them. I try to explain what I am doing and I tend to explain everything (too much information) so they will understand how they broke it, so they don't it again. They don't care, they just want the nerd to fix it. They are so dumb they assume that I am babbling incohererently. Overheard recently:
"Oh no, he's coming over here. Don't talk to him. Once he starts talking he will chew your ear off."
But guess who is the first person they come to when they have a problem?
@Positron2 Sounds like in addition to others not understanding it, there's negative judgement as well.
Having to explain a shutdown, there isn't really a way to put into words how it feels, only that it is a bit of a brain overload. It's the opposite of a meltdown which also confuses people a bit and I feel it is really misunderstood 
that I am not smart (ADHD)
@Mellietronx Can so relate to where you're coming from there. ADHD can be a challenging thing to have to live with. It makes me sad when you say you're not smart though so I want to give you a few words of encouragement. It's not that you're not smart, it's just that you're very smart but in different ways than the majority of the population. The world is not built for brains like ours which can pose many challenges and is why we feel stupid when infact, the opposite is true <3
@VinylFly thank you :)
@AffyAvo
Well I was going to say pain, but then I saw we are in the chronic pain part of the forum so ummm instead perhaps I shall say PAIN in capitals, or p a i n, or perhaps Pain with a capital P, or pAiN, or even PaIn, there are so many different variations!
@MistyMagic Ugh, I get you! I've experienced pain and the typical pain descriptors aren't always useful. Luckily for me it's mostly acute, not chronic.
I would have to say the pure exhaustion that I feel. With my cfs, it's often delayed fatigue; so I'll go into town one day then a few days later I'll not be able to move in bed. I also wish people would understand that being at school makes cfs worse; so I need to take time off.
@peacefulHug92 I find my fatigue is quite the struggle. So many just relate to it as being tired and it's more than that.
I feel like I've entered the psychic zone. It's refreshing. On a related note, is anyone familiar with The Spoon Theory?
The most misunderstood symptom is the one I least understand as well. I seem ok when someone asks if I can do something. I go and do that thing or take that action, and then... Something Happens. A migraine. Too exhausted to get out of bed the next day. Suddenly Sick. Or Pain All Over. Or something else I don't see coming. Just a roulette of what will happen.
I don't understand any better than anyone else what just happened. I start refusing things based on not having enough energy or out of not being sure when or how one of these will strike, and the other person will give up on asking me to do anything. \_(ツ)_/
@Deathmint Yes! I'm very familiar with spoon theory and it does explain lots. Often the number of spoons we will start a day with is unpredictable or they can randomly disappear throughout the day and others do seem to be confused by that.
That people don't get sometimes I'm just not ok.
I don't have something as bad as most people here, what I have is IBS. But this is a nightmare to live with, specially since my anxiety triggers it.
So sometimes I'm just in alot of pain or just with gass and I'm trying to breathe calmly and get myself together, and people ask NON stop why I'm quiet!!! So I say politly that I'm not feeling so well and the answers I get is "you're never well...." ofc I'm not! Is a chronic condition...
@AffyAvo For me it's most frustrating to have to explain how even though I have vision impairments, I can still see some things using my glasses/magnifiers. Usually when people see me reading or looking at things they assume my disability is made up.
that i'm always tired and it isnt because i do not get enough sleep. i guess its not techinically a symtpom but its a side effect from the medicine i take to manage my heart problems caused by the marfan
@caringShoulder14 I wasn't thinking of side effects when I started this, but that's a good point too!