Chronic Fatigue

For 20 of my almost 30 years I have shuttled back and forth between doctors, specialists, clinics, hoping that one day someone would look at me, take my concerns seriously, and help find a viable treatment plan. It’s taken me 20 years to make bare minimum progress; often hitting the roadblocks of “you don’t look sick,” “you don’t present normally,” “it’s just stress.” That coupled with intersection of navigating medical care as a Black woman has presented with constant challenges of having to prove my humanity and that I’m worthy of care.

Goals, dreams, advancements, have always been placed on the back burner as I shifted, delayed, and gave up on them in order to accommodate my worsening symptoms and pour into clinics, specialists, and testing. I’ve watched as those around me soar with a vibrancy in life while I remained stagnant. Stuck in what feels like an unyielding loop of delay, baby step forward, delay again with my health.

As how the loop proceeds, I stepped away from my graduate program temporarily in order to give my body the break it needs and to focus fully on my health. Despite initial feelings of despair with having to shift yet again, it has been transformative in giving me the uninterrupted breath that I needed. However, despite taking a vital step forward, I feel like I’ve been shoved 50 steps back, straight into that loop again.

I fought tooth and nail to be seen as someone worth saving, someone worth caring for, someone worth trying to find the conditions only to be met with “you’re too medically complex,” “you’re too genetically complex,” “medicine probably hasn’t caught up to what you need to find a diagnosis.” Where do I go from here? How can I continue to advocate in a space that deems me too challenging and discards me? Deflated, devastated, despair, it is all encompassing. How do I move forward when I don’t see it as worth fighting for anymore?

#EhlersDanlosSyndrome #ChronicFatigue #Fibromyalgia #MyastheniaGravis #Depression #MentalHealth

Ok so… I don’t really want to avoid saying stuff in a place meant to be safe but I am tired to the bone.

It’s February 26th, that means the year had only 57 days so far, and it’s effing crazy! I do something, I think I can stop and breathe then no, the gods hate me and throw something new at me.
My retina is dying, I’m exhausted, I’m depressed. I just can’t take having so much medical appointments and phone calls to do, and yet I have to do them. Trying to get as much as I can through WhatsApp from the clinics I attend, but some are only phone or basically having to go in person. And I have some points to make about this ordeal.

Also, accessibility is being ignored basically, and I’m not like in the USA where they’re actively harming ADA and DEI, I’m in effing Brazil but due to a lot of international relations stuff to be done, if you don’t know Brazil is basically on the leadership of the movement for the independence of the World’s South. But then the things I and many other citizenships have to face daily are basically abandoned, and it’s even more crappy when it comes to my State, that is with a disgusting governor that is basically screwing all the progress we had from education to social morals so far. It’s just exhausting. And this year are presidential elections over here so yay, let’s have another fierce fight against extreme right facists, anyway,

I think I finally can with more agency understand my mum, because when I was a baby and she discovered I had congenital cataracts, absolutely nobody was there to support her, she was my age with a me baby, going everywhere just to get me to have surgery and be able to live a sighted life. And now I’m basically facing the same, with the exception that I have some support from, you guessed, my mum. But she can only go so far as to help financially mostly because I’m an adult, so I have to make the phone calls, look for resources, adapt my day-to-day life and basically deal with it and kind of suck it up. Because acconrding with my grandma I have no motive to cry, when I was crying out of despair because I’m getting blind and I held composure for too much time and I just broke when I was home.

Is anyone actively invested on my life? Well, only the surface stuff and expectations I’ve always had to deal with. Be the perfect student, be the perfect adult, study my ass off to be able to get a job, etc. my grandma can’t even grasp that I’m only in university because of the effing paper/degree, because it teaches me nothing actually useful, everything I have to learn I have to do it by myself, and she can’t understand it, and look, she’s not an old senile stereotyped grandma, she’s tough as a rock and stubborn as a mule. If I’m at an external course, she always asks if it’s with uni, and when I say no for the hundredth of time she asks “what about uni?” And I’m like “I don’t give an eff about uni, I only do what’s required, get a good grade and forget about it for the rest of the semester” .

Anyway again.

I’m so frustrated honestly, not only because my blindness, my difficulty with being autistic in a society that’s not empathetic. But basically society in general! I’ve been to a wonderful place in January and met wonderful people, when it was over i came back to real world, and it sucks! People have no empathy, people disguise empathy on fundraisers for public image, and I was able to see it behind the curtains. People have no interest on important stuff, people are basically choosing ignorance and that make them stupid. People have no more critical thinking. And that’s frustrating. For me the world feels like having to play dull because rarely will I find someone I can have a conversation on topics I’m more interested in, and a very ungrateful place to be in, because I invest emotionally on people just for them to not be reciprocal and it’s not a “oh my date turned me down”, it’s basically being the one reaching out to no avail, or being reached out by others only when they need my help.

I am tired.

Has anyone done camp America with Crohn's disease or any other condition? I'd like to do it but after speaking with some camps I'm now a bit nervous because of how accommodating they can be. So anyone who has done it what insurance did you use? Roughly how much was insurance? How did it work with medications? How did you manage symptoms if any? And how supportive are camps and is it possible to get through it if having bad days with fatigue or other symptoms? #ChronicFatigue #CrohnsDisease #InflammatoryBowelDiseaseIBD

Just got the app, hoping to meet other chronically ill people going through similar experiences.

I suffer from chronic pain and chronic fatigue and have a tremor but have still not been diagnosed. It’s difficult balancing uni alongside my illness as well as my disability being “hidden”.

My parents want me to try it but it seems a lil scammy. Does it actually help? #ChronicPain #ChronicFatigue

Hello everyone, I hope you’re all doing well. Because of ankylosing spondylitis and the medications for it, is it common to feel constantly exhausted and struggle to finish work on time? How do you manage frequent delays and cancellations? #AnkylosingSpondylitis #ChronicFatigue #Uveitis #MentalHealth