How do you explain your difficulties?

Post Reply New Topic

Whether it's just autism, or if you also have mental health conditions or physically debilitating conditions (for me the one that affects my life the most is chronic fatigue (ME/CFS)), what do you tell people to help them understand that you are not being difficult but actually want to be available for the things they want and need, but can't?

I have become used to hiding my chronic fatigue as much as I can, but it's become an issue recently because I have a new relationship and I want to explain myself. How much do you say? How do you go about it? Do you sit down and have a specific talk about it? Or just try to work it into conversation here and there?

I know there are varying opinions on masking regarding ASD. If you tell people, what do you tell them?

I do not say I have autism, and I have sensory processing issues, cognitive profiles, communication and socialization issues and all that medically vague jargon.


I will say; I may not hear what you say, please be patient when I did not get them all.

I will say; multitasking stresses me out and I just like doing things one at the time.

I will say; I don't know, I couldn't relate or understand that situation or reaction but I will try and honor it.

I will say; I always have to bring a rag with me, antiallergy meds don't always work.
No, I do not have COVID, but it hurts my head, usually kept me up at nighttime and it is why I'm sleepy half the time.


Basically, I paraphrase everything into layman terms.

Laypeople are not doctors or medical professionals.
And not all is know-in-need-basis or they-never-had-to-know.

Also I'm not even masking. I don't hide my issues.
And not hiding my issues does not mean communicating it; only that matters is that the receiver understands the very basics of it.

They don't have to specifically know if I have a medical condition or not.

They will assume things if I say any label.

Unless I'm able to make a judgment if this person will understand more as a diagnosis for an explanation of why I do certain things, or become more rigid due to the assumptions.

Gained Number Post Count (1).
Lose Time (n).

Lose more time here - Updates at least once a week.

My answer is very similar to Edna’s ^

I will typically describe symptoms of the condition without actually naming the condition. I find people are more likely to relate to what you are saying that way. If they are reasonably knowledgeable, they may bring up the condition/label themselves.

I’ve given up saying I have autism as I’m fed up with the “you don’t seem like you have autism” answer. Instead I list the individual symptoms I have, and people don’t seem to argue with that. It actually leads to interesting/thoughtful conversations a lot of the time.

For me, it depends on who it is. If it’s a friend, romantic partner, or family member, I would tell them that I have autism and explain what that means to me.

When it comes to acquaintances, I’d be more likely to just say that I’m “shy,” “introverted,” “quiet,” etc. I’ve not done that very often because it’s usually self-evident. Of course, some people who are really outgoing might not understand so much.

people seem to accept and support me better when I just tell them I have a sensory processing disorder.

Usually ADHD, OCD and autistic traits. Or via the previously more popular Harry Potter and the ADHD, OCD and autistic traits.

I find it difficult also, especially explaining vague issues like fatigue. Because everyone gets tired sometimes, it's hard to get across that I may be dealing with a level of fatigue above what they are imagining. And hence when I say I'm not able to do a certain thing or attend something which I'd said I would, it's not that I'm trying to get out of doing that thing. (Which seems to be the common assumption whatever I say). I have to try to explain that much as I would wish otherwise, I am limited in what I am able to do, and it's not a choice.

Sorry I don't really have a solution, I'm still trying to work out the best way to get it across to people.

When I was recovering from Lyme which added brain fog and compounded my anxiety and executive function issues I took to telling people “I really am not one hundred percent right now”.

Sometimes less is more.

Like other people posted - sometimes I will be specific but vague about symptoms. The name of the diagnosis might help but more often than not it seems to “not help”. Be truthful. Tell people what they need to know not info-dumping. Be succinct. Cover both the “what it is” and “what it isn’t”. “I’d really like to, but I just can’t right now. I am dealing with some medical stuff” or “I am really better with computers than I am with people. It is something I am aware of and I am working on it.” Or “I am just exhausted right now. I need to pull back some. It is not that I don’t want to, you (or “your organization” or “our organization”) is really important to me.”
Some people will still not get it because they will see things based on personal experience, and some people have such a different personal experience when compared to mine it is hard for them to imagine.
The key principle is to meet them halfway way. I can at least try to see things from the other person’s point of view and try to articulate both my understanding of the other and my own experience in a way that makes sense.
Communicate the intention.
What it is AND what it is not.

I don't explain anything

Maybe this is where I'm going

iyam what iyam.

I guess my biggest worry is that by trying to explain I can make it worse, by giving the wrong impression. I just really hate to have someone I care about think that I am making excuses or don't want to see them, or hurting their feelings.

I like the suggestion that several of you gave that it's better to talk about specific difficulties, and in ordinary everyday language, rather than try to explain diagnoses. On the other hand, that's hard to do when you are super-exhausted all the time, because it's outside of the normal experience of fatigue, so it's hard to convey.

I've tried to explain, for instance, that I can't sit up for hours in a chair (because I have to lie down) and was offered a chair with a padded seat, which doesn't help at all.

Some people just won’t get it.

It is hard for people to genuinely understand people different than themselves.

Google “double empathy” and “autism”. You are not specifically talking about autism but the principle still applies.

Going for the Win-win should be the goal. Part of that is communicating and looking at things from the other person’s point of view. Part is setting heathy boundaries. People-pleasing and being a door mat is one extreme. Narcism and “my way or the highway” is another extreme. Finding a healthy balance that is sustainable is better than the other two. A win-win isn’t a win-win unless it is a win for you. A win-win isn’t a win-win if it isn’t also a win for the other person. Sometimes (less often than one might think at first), the best option is “win-win or no deal”. But first make the effort at win-win.

The DBT skill DEAR MAN (google for more info) also comes to mind.