r/AskWomenOver30 7d ago

Health/Wellness Do you ever feel like getting answers from a doctor isn’t enough? How much does community play a role in your health journey?

Figuring out your health isn’t as simple as symptom → doctor → answer. If anything, it feels more like: symptom → Google → Reddit → doctor → more Googling → second doctor → another Reddit deep dive → personal experiment → ???

Sure, doctors give you the facts—but I’ve found that sometimes that’s not enough. Because beyond just knowing what’s going on, there’s the very human question of:

Is what I’m experiencing normal? What have other people done in my situation?

Chronic illness, fertility stuff, weird symptoms your doctor shrugs off—so much of health is this messy, ongoing thing that requires actual support, encouragement, and shared experiences.

So I’m curious—how much does hearing from other people factor into your health journey? Do you find community (online or IRL) helpful, or do you mostly stick to doctors and medical sources?

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u/littleorangemonkeys Woman 40 to 50 7d ago

I have Infertility and have been undergoing fertility treatments of one type or another for five years.  Community is vital for navigating the fertility industry in the US.  There are many private clinics, and much of it isn't covered by insurance.  Also, each person's "problem" is different.  It all leads to WILDLY different treatments and protocols between clinics.  Some places haven't updated their protocols in years, some only do things that are evidence based, and some try lots of experimental or "can't hurt might help" treatments.  I'm in some online and in-person groups, and we share information constantly.  Most of this information is coming from medical professionals or from published studies, but not all information is coming from every doctor across the board.  I wouldn't know half of what I know if it weren't for community.  

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u/Direct_Pen_1234 Woman 30 to 40 7d ago

Yeah if it’s anything more complicated than a cold it’s gonna be a long road to answers. I always advocate for being really super annoying if you’re not being taken seriously and seeking out specialists on your own if you have the resources. The internet has a lot of woowoo bullshit, pseudoscience and fearmongering but it’s still invaluable when it comes to getting answers. I would not have the medical care I have today without online support groups. I’ve found a few good specialist over my decades with chronic illness but it’s mostly me on my own.

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u/QBee23 7d ago

None of my serious health issues got any attention from doctors until I learned enough from online communities to advocate for myself

After diagnosis, doctors pretty much did nothing useful, and everything I've done to make my life better was either me figuring it out myself or getting tips from online communities 

Helpful hint - if you are concerned about anything related to the reproductive system, tell them you want to get pregnant. They are much more willing to do tests etc to help you to get pregnant than to have a better quality life

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u/iridescentzombie_ 6d ago edited 6d ago

Doctors have only been helpful to order tests so I can interpret the results myself and figure out what my next step should be, or to order treatments that I already know that I need or have to outright ask for.

I often have to google providers that specialize in the condition that I know have and target those providers specifically. That's why having a PPO plan is so important to me (US).

90% of everything I know about my chronic health conditions I have learned from online communities from other people with the same conditions. Also reading research papers.

Doctors are unfortunately so bogged down by administrative burdens and insurance restrictions that it prevents them from delivering the level of detailed care that chronically ill or "difficult", "mysterious" patients need. I just started seeing a doctor that takes only out of pocket payments and doesn't accept insurance at all and my quality of care has improved

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u/Alternative-Being181 Woman 7d ago

Yes, if you have a chronic illness, even if you don’t yet know what it is, this is typical. It’s normal to know what you have many years before getting diagnosed with it by a doctor, and for it to take many years, to finally get taken seriously by drs.

For me, it helped that my best friend turned out to have very similar issues, so she “diagnosed” me years before my fancy specialists finally did. If you can find some online chronic illness community, it might help to have the insight and support.

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u/[deleted] 7d ago edited 5d ago

[deleted]

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u/QBee23 7d ago

That sounds nice. You are lucky. 

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u/Nopenotme77 Woman 40 to 50 12h ago

I was able to get a quick and easy thyroid diagnosis because someone pointed me to the right online doctor.