Self dignosis

I know I am neurodivergent and me and my therapist believe I have AuDHD (Autism ADHD combo). It is currently not safe for me to be able to seek help from my parents due to past trauma and not having the emotional support from them I need (mainly my mom). About a month ago I started to wonder if I had POTS since I can stand up at a completely normal speed and fall over and black out. Most of the time I just get dizzy, light headed and brain fog. I can be just standing and experience these symptoms. They have gotten worse as I have gotten older. I said something about them to my mom once and she just laughed it off. (Idk if there is any correlation but me, my mom, and my grandfather all have this). Research has shown there is a high comorbidity between Autism, ADHD, and POTS.
My second thing is Hypermobility. There is also a high comorbidity between hypermobility and neurodivergence. I have always shown signs of hyper mobility in my joints. I get pain after exercising even if I did it correctly.
Even if I was in a safe spot to get a dignosis I probably wouldn’t be able to because of the American Health Care system. They will only listen to you if you are a cis white neurotypical man. I remember when I went to the doctor a little over a year ago to get my ankle checked out and I got xrays taken, he said it was a growth plate irritation, gave me an ankle brace, said it woukd go away over the summer. Guess what? I am still in pain over a year later. It clearly didnt go away now I have chronic pain!! Thank you mr doctor and my mom who didnt let me go to the doctor until 8 months later after I complained about it every single. day. Anywhos back to the point
Would it be ok for me to self diagnose myself in a situation like this? I feel awkward self diagnosing but I also feel like I need to know what is going on inside of me so I can give myself the best care I can give me.
(Sorry that was a ramble-)

22 Likes

i have nothing to say (sorry :sob::sob:)

but we are always here for u nepi, ilysm <33

sending hugs cross-country :people_hugging:

4 Likes

Diagnosis always starts with self diagnosing. And it’s always important to understand how your body and brain are functioning in relationship to everything around you. Im so sorry that your current situation does not comfortably allow you to seek out the help you need and deserve.

I’m not sure if you are homeschooled or go to school, But if you do go to school, you might want to seek out a guidance counselor or a nurse to talk about these issues. I’m also not sure of age, but age can be really restricting when it comes to mental health and diagnosis - Especially when you are at odds with how your parental figures view these certain things.

Long story long, it’s never wrong to advocate for yourself. Keep being persistent with your family. Also, through your self diagnosing journey, Try looking up ways on how people manage with it without medication/therapy as a start to find out ways that can help alleviate issues.

4 Likes

I do go to public school but my school/district policy requires our councilors and nurses to tell our parents which really sucks. I am still quite young 13-15 range. Hopefully one day I will be able to get a proper dignosis

4 Likes

I hope so too! My family was the same way while I was growing up so I completely understand.

Keep a good group of friends who care and support you. And keep caring for yourself too!

4 Likes

I have a really good group of friends. They always deal with my antics of always being injured or complaining about pain. They always make sure Im ok and one of them (whom I am going to Lacrosse camp with and I am super excited about) really deals with it and will tell the coaches when I am really in pain (both in school and at Lacrosse) because Im such a people pleaser ;-;

3 Likes

As long as a self diagnosis is backed with reason and research there’s no reason to feel awkward! Also for POTs, I’d look at compression socks :3

4 Likes

Now that’s support!!! :joy: that’s amazing you have a friend like them!!!

4 Likes

compression socks make me fall over from my weak yet super strong ankles-

2 Likes

Aw sad, where I haven’t done any research that is the only way I know, but I’m sure looking things up will help, there’s a possibility I have pots as well, I have audhd, and experience these symptoms, however I’m also thinking it’s my anxiety, sometimes I’m not anxious when I feel these symptoms but the majority of the time I am, so maybe a mixture? I am going to the nueralagist sometime this so we can look into what’s wrong haha

2 Likes

in short, i’d say yeah it’s okay in this situation. i’m in a very, very similar situation (probably audhd + hypermobile, probably dont have pots but am anemic) and pretty much ended up self diagnosing myself after researching for months bc my parents won’t take me seriously

maybe try to talk to your school counselor for accommodations if u feel safe enough to? i haven’t tried it since i’m not in public school anymore but it might be worth a shot

gonna add to this later but i’m in an airport n on the move rn

2 Likes

Self diagnosis is not a good thing to do. This will not be accepted and the care or treatment you require may be missed.
The only real way to be sure what your diagnosis is, is for it to be assessed and given by a medical professional.
I understand I am in the UK and very lucky to have the NHS but I would say this to anyone. Even in the UK we have extremely long waiting lists to see medical professionals.
By all means advocate for yourself regardless of your age but this is different to diagnosis.
Please persist with all support available to have the correct, appropriate reviews and assessments.

Good luck with getting this sorted and I really hope you get your pain under control :hugs:

1 Like

I’m sorry Neptune I hope you feel better and we wouldn’t know if we didn’t self diagnose, we know our bodies better than any other human , you know what you feel. But you also need confirmation from other people like doctors too.

3 Likes

alrighty sorry it took me a few days but i’ve got about twenty minutes to kill so i’m gonna try to write out what i wanted to a couple of days ago:

very long… tl;dr yes it’s okay if u think it’ll help you

to answer your question at the end, i’d say yeah, it’s okay. we have a lot in common (already said) and while i don’t necessarily tell people i’m audhd, i do tell them that i’m “probably neurodivergent” because i also feel uncomfortable giving myself those labels without a diagnosis from a professional, no matter how much i feel that i fit. even though i don’t use the labels, i still try to work with them

like, when i’m looking up how to do something (usually school stuff), i may look into the experiences of other neurodivergent people and try to do what they did. mostly because i’ve found that the most common methods (like pomodoro, time blocking, scheduling in general honestly because time blindness sucks) don’t work at all for me. so feel more than free to experiment with those kinds of things; if it works, it works !!

also, what a lot of other ppl here already said is very true: the first step to getting a diagnosis (especially as a teen or adult) is to do your own research and decide if it’s worth pursuing one. especially in places like the us where it can take months and months and a lots of money to get anywhere…

the same goes for POTS. i really think you should seek treatment for it if you can since it’s a more physical thing and could actively cause you harm (namely the blacking out). you can try some home remedies in the meantime if you suspect you have if to see if you see any improvements; i don’t have it myself afaik so i can’t speak much on that but it may help to look into it online. i’ve heard that compression socks and more salt + fluids help but i think that’s just surface level stuff. or maybe explain the situation to ur school nurse (only if you feel it’s safe to do so)

anyways tl;dr yeah. i’d say if you think it’ll help you, it’s all right to self diagnose. your choice whether or not you want to go for a real one later on but you’re valid either way. i’m rooting for you man

1 Like