How do you explain your difficulties?

Post Reply New Topic

It's very difficult for me to explain myself to people because it's very difficult for people to believe me or to understand what I am actually saying. So I tend to just give up which has led to extreme and and crippling social isolation.

Personally, creative writing exercises might be helpful.

If it's someone I know well or want to maintain a relationship with, I tell them my diagnosis. Likewise if it's a total stranger like someone in a medical office or someone on customer service. The grey area is with casual acquaintances where I can't be arsed to spill out my life story because I know them enough to feel awkward, but not well enough that they deserve to know.

In the case of CFS I personally would tell my partner and give them a link or some information about the condition. I think I'd rather have him know about it than wonder why I'm always backing out of things. I do have the same condition and I know how frustrating it can be to find work-arounds all the time without feeling guilty.

I'm not saying that's right for you though. Only you know how comfortable you'd be sharing medical information in your new relationship. I hope it's going well beyond this one concern.

I just say I have Aspergers. Though I've recently heard people claim that's an outdated term it's using a scale or something now. I think I was dx in the 90s as asd but as a child I was dx hyperactive and seasonal affective(depression winter and more hyper summer/mood swings at season shifts. Which no longer happens).

As an adult I've got quite a few dx.

As a teen they dx sciatica, allergies, and eczema. At about 7 I suffered a severe beating by my baseball coach who was on something and doing things he shouldn't be to my friends of that time. It paralyzed me for awhile and I went blind so I had surgery to fix my eyes. I walked again but have scoliosis.

As an adult my newest dx is sleep psychosis. I was suffering from severe insomnia and went a bit crazy not able to tell vivid dreams from memories. I'm fine again as I was put on something that helped my sleep. I've been on it for over a year and slowly coming off it. I think trying to go to college started it as I'd only get 3 to 4 hrs sleep due to commute to school, homework, and regular life stuff. Then I mov3d and had neighbour issues then mice problems in my apartment building.

In late 1990s just after my child was dx with terminal brain cancer I was dx with spinal muscular atrophy. Before that I was dx with fibromyalgia, Gerd, ibs, polymyosistis, polyarthropathy, pelvic inflammatory disease, and bursitis.

My daughter died in 2002. In 2009 my son moved in with his father. When he turned 19 he cut all contact with me. He likely has sma and doesn't know it. He's dx adhd, expressive receptive language disorder, articulation disorder, hypotonia, poor fine motor, and 69 to 80iq(tests by the school originally said 69 but his dad had him retested).

My children's father is ADHD and also sociopathic. Police told me some concerning things one time. Yet judge wouldn't talk to me in custody court when my son turned 15. He simply asked my son where he wanted to live. Not why i had concerns. I had been the only one dealing with his issues since he was a baby. When my ex went for custody he said our daughter died and he didn't want to pay child support but wanted the tax credit.

I don't say too much about my health. But have on the bus said I have muscle disease and arthritis. I often don't mention my asd. A guy I've been hanging out a lot with is 17 years older. He's a bit eccentric. I've told him some of my stuff. He jokes I've got more boxes ticked than him. His grandson is autistic nonverbal. He's still close to his ex. But I don't think he's told her I'm on the spectrum. I told him he should tell her about autism pride day. Not sure if he did. He said he wasn't as involved with raising his grandson so didn't want to upset her by appearing preachy.

Oh and as for spinal muscular atrophy. Two of my uncles had it. Ones son did too. The others daughters had different conditions. My mom had depression but stuff ran in her family. Cancer ran in my dad's family. He died of it, his sister, my brother, and my cousin. My sister survived. My mom only had one with cancer. Her sister was dx terminal breast cancer at 74. Later though my mom had an inoperable giloma. Her brothers, aunts, and uncles didn't have cancers. But probably a few sma linked things.

Sometimes I do worry about telling people things as they might stereotype me. One psychiatrist I saw for sleep problems talked to me like I was slow or something. It was very frustrating. Nearly pointed out my iq from testing for college. Then decided against it. He accused me of having someone else's brain mri pictures. Then I told him which hospital the report was at and that he could look at it directly. Then he claimed he couldn't read mris or xrays. Psychiatrist here are supposed to be regular doctors with extra training. They all learn scans at school. I left it alone but he was being a jerk. I had an old stroke damage clearly on one side of my brain in the scan.

Thank you Isabella.

Because I have both a mental health (I don't know what to call it since I don't have a diagnosis) and chronic fatigue, people tend to assume that they are related (even my psychiatrist has said so!) but they are not. But either one can knock me out so I am not available on a given day, though it's mostly the fatigue. I struggle with what to say, and I am seeing here that many people do.

My autism is mild enough that I don't bring it up at all. It feels awkward to add another health condition to already two that are misunderstood.

I have a bit of various physical & mental disabilities. A couple of my physical disabilities are kinda major & quite noticeable if you watch me for a while. I think those physical issues are easier for others to understand than mental things so in person I'm more upfront about those. Like I'll say I have an extremely rare low vision disorder that causes me to be extremely nearsighted even with glasses. I also have some colorblindness & I can be more sensitive to lighting conditions. I cant drive & I do things up close. I'll also say that I have a tremor disorder that can act up when doing fine motor-skills tasks or when I'm talking if I'm frustrated or anxious. Very frustratingly I was born with the vision issues & I had the tremor disorder since high-school at least & my docs thought I was just being a difficult patient & dismissed me till I was 18
If I talk about mental stuff to people other than medical professionals & my girlfriend & her family, I'll mention that I have dyslexia & ADD. I was diagnosed with both since kindergarten & I went to a school for dyslexia. I don't really have a need to mention autism to others.

When my ADHD shows itself (like in being forgetful, and I actually notice and I know other people notice), I will say something like "sorry, my brain isn't working today"
Typically no need to say it's ADHD... people probably don't care to hear that detail, and it may not actually explain much unless they are familiar with ADHD.

When I don't recognize someone cuz I'm faceblind.... "sorry, I'm very bad with faces and names"

Audio processing issues.... "can you repeat that please?" or "sorry, I misheard"

Being noticeably spacy.... "sorry, I was in lala land" or "wow, shows how much I was paying attention" (basically laughing it off)

I don't usually talk about it. The main challenge I have day-to-day is auditory processing against background noise. Basically if there's constant background noise (chatter or machines or rain) I can hear people's voices but I can't follow what they're saying, it just becomes a wall of sound. Anyway I'll sometimes try to explain that, although most people don't understand what I mean. I'll sometimes ask to go somewhere quieter and just say that my hearing isn't very good which isn't true but gets the job done.

Same here.

In addition my boss knows I have ASD so he's got my back if something happens, and I try to find my own ways to compensate, like taking a lot of notes while people talk. Things like "beard, glasses, big hair" becomes "Section manager So-and-So" in my notebook.

^ I met a guy who had a great trick, he would say “where do I know you from” with great certainty. Now it is all on the other person.

I also keep little text files on my work computer with correct spelling of people’s names and additional details such as roles and reporting structure and areas of expertise. One guy left the company and then came back in a new role. I was the only one who had the complete history. I was able to brief a new employee who was trying to research the history of a particular project. I just cut and pasted the file into email. Never underestimate tho power of a text file.

I also started using visualization techniques. One guy I worked with was named “Fred Mcquiston” could I remember Mcquiston? Sure, it was so unusual it stuck in my head. It reminded me of Qwilleran in the ‘Cat Who…’ book series. Could I remember “Fred”? Not for the life of me. The company email system required first names to trigger the auto-completion. I couldn’t get the first letter. One time I had to run up two floors to sneak up on his cubicle and copy his name off his name plate. The I added it to my text files. But it didn’t help if I ran into him at the coffee break lounge. I one day decided to use imagery: picturing him standing next to a life sized Fred Flintstone. From then on I never forgot and instantly knew he was “Fred” and always pictured Fred Flintstone when ever I saw him or pictured him in my head.

My supervisor from India, Harshad, I pictured standing between Hardcastle (‘Hard-case Hardcastle’) from the TV show Hardcastle and McCormick (played by Brian Keith) and Phylicia Rashad who played Claire Huxtable on The Cosby Show (and who I always thought was kind of hot). HARdcastle + raSHAD = Harshad. Always pictured him standing between those two people/characters, never forgot his name again. Coming up with the right image was some work, after that the remembering was easy. I don’t know why I have trouble with some names and not others, but I do.

The book “Moon-walking with Einstein” has additional memory techniques including how to remember faces by turning features into numbers, and using PAO and the Memory Palace.

What I say: “Please tell me your name, names are very important to me and I try to get them right. I’m not very good with names but it is something I am working on.”

Or “I’m very sorry, please tell me your name again. I am just bad with names, it is nothing personal, it happens with all names”

If I am sure i have heard the name before but have forgotten I say “of course, (insert name), of course” very firmly as if “yes I was just about to say that” even if I had no idea.

(Note I had to look up the correct spelling of some name in this post on the internet… sigh)

^^Thanks for those tips, Fenn, they will be helpful to me where I work.