[Full Episode] Invisible Illnesses & Ehlers Danlos Syndrome with Meghan O'Rourke | I Weigh EP 157

Author Meghan O'Rourke joins Jameela in this episode to discuss invisible illnesses, or illnesses that do not manifest externally. They cover their own personal journeys with Ehlers Danlos Syndrome, how lonely having an auto-immune disorder can make you feel, why these and women's health in general is so under-studied, the relationship between auto-immune disorders and mental health, and why we can be hopeful about the future.
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[@ginevras]

The worst feeling is when you know there is something wrong with your health but doctors say that you're trying to seek attention or to get out of work/school. Doctors gaslighting and planting seeds of doubt is what I went through for about 15 years

[@faithvanessa6528]

Jameela Jamil, you will always be famous. And a lovely human being. Thank you for using your platform to speak about EDS.

[@lissyc123]

A bout a minute in I was already sobbing. Haven't finished the video,10 mins in and I'm drenched in tears, just had to say that. Thank you both for doing this. 😭

[@jameelajamil]

Wow, thank you!

[@Muliebritie]

I am a former marine i moved to china very recently and i have been feeling horrible and no one would belive me for so long.... thank you ❤ i cried the whole time watching this i feel so validated and strong thank you

[@maddyshenk6325]

They really described what it feels like to be one of us with hEDS. Having that hope that we are finally better then get sick again. How we always feel guilty like this disease is our own fault and course it’s genetic not environmental or behavioral. The stuff Jameela said about feeling 80 at 16, and that we just can’t do stuff normal people do like going out to a club in your 20s or 30s. I realize I push myself far more than I should. I’ve not yet learned to take a break rather than push through when the pain is too much for any sane person to push through. Every single symptom they mentioned, every situation, I’m like me too. Ty for getting this out there. I’m going to share this with those close to me.

[@lamelaxity]

Did they bother watching it for you? Lol

[@lissyc123]

I'm going to OBNOXIOUSLY recommend this podcast episode to every health provider that I come across. I would say though that Biology is complex seeing as there are at least 40 variations of int€rsex presentations in people.Medication dosage is definitely something that needs to be studied for every type of body and implemented. Studying the connections between EDS/HSD and nuerdivergence, especially ASP, Autism,ADHD is something extremely important. I'm 41and the latest Dr. that I saw doesn't believe me and REDUCED my Cymbalta and Nuerontin (the only things they give me to help my pain besides ibuprofen) and said that he's going to have me "happy again" in no time.😒 Even if I was complaining that I'm still in horrible pain. I need a diagnosis because my kid has always presented symptoms and that would be helpful for a diagnosis for him. I'm in HORRIBLE pain every day, beyond exhausted all the time and a broke single mom. I have to push through everyday even if I'm crawling around on the floor. 😫 I do feel so alone and do have a hunger for life. 😭

[@randomname4726]

My husband with EDS has the same problem with painkillers and anesthetic, the numbing med at the dentist.

[@toni5543]

I was diagnosed last week. Im 28. Ive been trying to push for answers for yearsssss

[@katkaplan3]

Ty for this- felt you were both in my head. Fellow zebra here. Can relate to the lack of wrinkles, looking young, not realizing everyone isn’t in pain all their life. Etc.

[@eternal.spiral]

As an invisible illness sufferer, it is amazing to see some light on this! I have endometriosis and I am wondering about EDS. Thank you so so much for this ! 💓

[@jameelajamil]

big hugs

[@orionh7201]

Thank you for talking about the problems that a lot of marginalized communities face throughout the medical system. It's really important that these things be talked about. Especially because it will have a huge positive impact on doctors who are less biased and more inforned who can properly treat patients and actually understand them.

[@FairyLights4713]

thank you both for covering this subject!! I can't tell you how many times my father completely disregards any mention of pain, even after I had been diagnosed with hyperthyroidism, Graves and fibromyalgia for years, he still denies any existence of illness. he's called me a hypochondriac constantly since I was a child.

[@ginevras]

I know what you're going through and I am sorry you're experiencing that. I have hypothyroidism, Reynaud's and fibromyalgia (along with epilepsy, hypermobility syndrome and bipolar 1) and many times my father has heavily implied that I'm faking my health issues

[@jenniferjohnson8376]

Thank you! This is such an important conversation. For those of us who have been belittled for trying to understand and improve our health it is refreshing to have our experiences validated. I just got Meghan's book and I'm looking forward to learning more. Thank you!

[@dylanwallace9904]

Thanks for all the information! This really helps me understand more about what my sister deals with.

[@julelouise]

This was a great talk and I identified with so much (I have something similar to POTS). It can feel lonely being home so much and it's nice to know it's not just me. ❤️

[@lmzaadi]

powerful stuff.

[@alexreynoso8867]

Thank you for sharing this with us!!

[@kittling5427]

Thank you for this, so much of it hit home.

[@TheDorkle]

Right onnn 🙌🏻 Incredibly articulate 🤘🏼💪🏼

[@catherinewilson4754]

Thank you for doing this podcast everything about this condition is truly unfuckingbelievable I'm either crying or laughing no one that doesn't have it could possibly understand its so unreal even when I am explaining it to other people I can hardly believe it myself I feel like I'm on some weird fucked up rollercoaster

[@libbywiskowski9618]

I'm glad you acknowledged that getting an early dx is not easy for alot of us and so many find out in adulthood. I wasn't correctly diagnosed until age 31 and I figured it out myself. In rural WI these hospitals/drs here would never investigated like I needed. I was lucky however that I have been able to slightly navigate this total bs healthcare system better bc I am a hospice healthcare worker/phleb myself. Of course I was 100% correct but still zero access to correct care management. I had managed well even was able to still work in healthcare with limitations. BAM pandemic there I am in the eye of the covid storm in an essential direct care job. I got covid b4 vaccines were available and now I'm dealing w 3 yrs of multi system inflammatory responses and still even less access to correct care. I've been so sick and I do have & had b4 significant cardiac involvement that were just exacerbated. I wish for a day when the burden of getting any help is no longer on the disabled person. Those of us dx'd late in life have very different experiences as well as socioeconomic environments play a part. Unfortunately within the disability community is also can you afford accessibility, I can't but I see so many things that might help but without actual help to get to any safe care or when things get out of control w pandemic issues. I'm definitely so tired of doing it alone. I thought eds was complicated.. nope hEDS & long covid much much much worse. I'll go back to just eds thx. #ZebraTales

[@splanet5088]

Hi Jameela, I hope you're doing well. Would it be possible to get Yamaneika Saunders on your Bad Dates podcast? She's hilarious with some equally funny stories!😃

[@hayleyyjayne]

🦓

[@FairyLights4713]

omg am I the first?

[@mariameenan7848]

This was such an interesting podcast until trans, race, white supremacist stuff got brought into the conversation. This is not helpful. I was literally thinking of purchasing the book because I have invisible illnesses but I won't bother now. And I'm sure many others had the same reaction. Such a shame as the beginning of the talk was spot on.