Undiagnosed

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I'm new here!

Hi, my name is NoOneBelieves. I'm here because I have chronic pain that has gone undiagnosed for 10 years now. Am still in my early years of life.With this pain, on many occasions my family has left me unseen and unnoticed when I needed them the most, this has sparked feelings of low self esteem, worthiness, feelings of being a burden and a reason for pain and sadness in people's lives. I have some friends I managed to make but I push them away because I feel unworthy of love, a burden, like how can others not see me a burden when my family views me as one. My symptoms have gotten worse over time and I feel my life slip off slowly but no one notices and it's funny because once i ever get a diagnosis (God willing) everyone will be like we knew something was not okay. Like you barely looked me in the eyes when I was at my lowest. Am not complaining because my family has helped with my medication and other things but am isolating a lot lately, am in so much pain lately, my brain is foggy lately and it's not these usual relapses but this feels more like the new normal. I just want a diagnosis so that atleast I can rest my mind and at least people stop considering me a mad one. Sorry for the many words but everything's weighing out on me so much lately and I only have me since I cant trust anyone with understanding my pain

#MightyTogether #ChronicPain #ChronicIllness #Undiagnosed

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Poll

Getting a proper diagnosis can take time and patience, and knowing which topics and concerns to share with your health care team can help with getting the answers, care, understanding, and support you deserve.

12% ●
Unexplained symptoms
14% ●
Pain or discomfort changes
8% ●
Diagnostic testing options
13% ●
Treatment ideas
8% ●
Medication side effects or reactions
12% ●
Mental health impacts
13% ●
Day-to-day functioning issues
11% ●
Communication or feeling unheard
11% ●
Next steps and follow-up plans
0% ●
Other (share your thoughts below!)
102 votes
102 votes13 reactions
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Gah, shit this is nerve wracking. #intersex (probably) #Undiagnosed

Well there you go, 2nd time I could ever come out anywhere. Oof. Yow. That just feels worse the more I think about it. It's not like one living soul ever responded positively to this fact. Can I get an "I" on the group label? Do I even want representation more than to be rid of some bugged out chromosome? Why would I even want the American medical establishment to know me this well? Big nope to doctors on this one too. I wouldn't mind a physical from someone who's not shrugging off my pathophysiology but who could that be? Doctors & TSA grabbing my junk is not fun, so why should I be fussed about the consequences of avoiding reminders of molestation?

By the way I'd be happy to help with some IT security for The Mighty just for my own peace of mind. Being ostracised this much sure taught me a lot of ethical hacking wisdom. The overwhelming feeling is that I'm more acceped among machinery. If mighty staffers want help with bots & trolls & AI & IT I just want to pay something forward rather than ruminate on my wacky self.

It's a good thing to lose sleep over when the only person I ever told this to IRL stands to benefit from more perspective someday though. One person out of billions is the only reason I'm even alive to say this.

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I'm inexplicable. #Undiagnosed #PTSD

Somehow despite the nagging presumption I can't really have any relationships, the fact that I'm wrong about that probably must be the only reason I survived as long as I have. That's something I need to be direct about with someone who helped me. I think #Autism leads to disastrous misconceptions about emotions & gender roles as a result. As a guy, in the majority of that group, I feel it's more frowned upon to talk about this.

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When nobody understands you

I have undiagnosed ADHD, and living with it feels like I have nowhere to go. Many times I have found myself mushed between not trying to self-diagnose myself, but also knowing that I don't fit in the norms like others do. I just don't have any answers to provide when people ask about what I have or why my certain habits or mannerisms are a bit different; they often label them as me being "careless", "reckless", or just simply "slow" or "picky" I have so many names given to me, yet each one of them feels very nameless. It's like I just can't fit in anywhere.

#ADHD #Undiagnosed

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Happy Diabirthday to me

I got my CWD (Children with Diabetes) award for 25 years of type 1 diabetes! Just wanted to share this milestone. It was weirdly emotional to get the medal in the mail and be recognized for one of my hardest invisible battles. 💙

And no, I did not eat too much sugar as a kid. It was a total coincidence being diagnosed on Halloween! Type 1 diabetes is an autoimmune disease. 👍
*Been asked that question soooo much* 😅

#DiabetesType1
#Fibromyalgia
#ChronicFatigue
#PolycysticOvarySyndrome
#InterstitialCystitis
#ADHD
#Depression
#Undiagnosed
#GastroesophagealRefluxDisease
#IrritableBowelSyndromeIBS
#Gastroparesis

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What is the most challenging part about being undiagnosed?

Trying to manage your health and address the symptoms you're experiencing without a proper diagnosis can be confusing and frustrating, especially when there are more questions than answers. Seeing multiple doctors or specialists, scheduling appointments, keeping thorough documentation, and seeking second (or even third or fourth) opinions can quickly become overwhelming.

What do you find to be the most challenging part of being undiagnosed? What has your experience been like?

#Undiagnosed #CheckInWithMe #ChronicPain #ChronicIllness #RareDisease #MentalHealth #Spoonie

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Tryna figure it all out

Been struggling with different symptoms for 3 years now. First diagnosed with chronic migraine, then ebv, then pcos. Lately things hadn't been adding up. We're suspecting pots, perhaps lupus, or other autoimmune. It's been kinda tough... the anxiety is the worst:(

#PolycysticOvarySyndrome #POTS #AutonomicDysfunction #ChronicEpsteinBarrVirus #Migraine #ChronicVestibularMigraine #Undiagnosed #Lupus #ChronicFatigue

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Thoughts

What's hardest for me as an undiagnosed patient is the feeling that I have no place. I'm too healthy for the sick but too sick for the healthy. I'm expected to do everything everyone does, keep functioning, in a body that is just broken. I don't have a valid medical ticket to validate and excuse myself

#Undiagnosed #POTS #AutonomicDysfunction #ChronicFatigue #Migraine #ChronicVestibularMigraine

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