Chronically ill and home abuse
Hi, looking for support and wasn’t sure where to post. Yesterday
Im 28 years old and became chronically ill due to chronic stress, underlying undiagnosed conditions, and covid over the past couple of years. I had to discontinue my graduate studies and move back home because I couldn’t support myself anymore after around 2 years of working. I am currently back home without a car and isolated in a rural small town after leaving home at 18. It’s been really hard.
My family situation has always been rough (I have ADHD late diagnosed and suspected ASD), with lots of fighting and emotional gaslighting and abuse. Yesterday I was verbally attacked by my father (he has always done this and I get blamed, insulted, and even hit when I was young). Now I know this to be narcissistic attacks. My mother always somehow is also a victim and my sister just hides. She is his biological daughter so she has never received this treatment. I am always the one to stand up for myself but it always ends up badly. They have had to help me get back on my feet and I feel is a source of resentment and an “excuse” for this bad treatment. I am basically a scapegoat and vulnerable so even extended family has let him treat me this way.
Due to the covid in 2022 I developed fibromyalgia so this has set off lots of pain and symptoms and I am afraid of being unable to go to work these upcoming days from this attack. I want to work to save money so I can eventually leave but my health doesnt help. I worry if I will even be able to support myself in the future. I just want the abuse to stop. Wish I could live somewhere else.
@dreamerstarchild
🥺
I'm so sorry you have to be tested in such a bad way.
I hope you know, what your father says, is not true.
You matter.
I'm sorry you struggled so much with your health also 💖
Thank you Amanda ! Your words are kind and make me feel less alone 🫶🏼
@dreamerstarchild
A pleasure 💜
@dreamerstarchild
omg...we have such similar stories. i am 29 and was diagnosed with cPTSD a few years back. i lived in california for 10 years, but my mental and physical health got so bad this past year i had no choice but to move back home across the country in the middle of nowhere with my parents.
however, my trauma started with my mom, and it's been triggered so badly being back here. i am not allowed to drive because i have seizures, and i was originally diagnosed with fibro but in 2020 they learned i have ehlers danlos syndrome instead.
i constantly feel alone and like this whole thing is an uphill battle and i can't run, if that makes sense. however, you brought me hope today knowing that i am not the only one going through this. i am happy to talk to you more and try to come up with some coping mechanisms or find resources to help get you out of the situation you're in. know that you aren't doing this alone even when it feels that way. i am happy to help however i can. sending you best wishes. you're stronger than you know. <3
Hi @blanketbabe ! Hope you are doing well today. Ran out of “spoons” yesterday but it made my day to know that someone could relate so closely :)
I’m sorry you have had to move back, I know it feels isolating. Being rural without a car is also annoying. Really wish there was infrastructure/transportation systems in place for people like us.
Trauma sucks and a cPTSD diagnosis is rough, sending love and healing. Having multiple health issues and needing to rely on others for care for you, especially those that traumatized you in the first place is very painful. I am here if you ever need someone to talk to.
I’m glad that you feel some hope and know that you are not alone or weak for what you’re going through. I would be happy to keep talking and discuss coping mechanisms, resources, and support systems. It’s hard to find care and community these days so I’m here if you need anything. Sending hugs and many spoons !
Side note: how did you get your EDS diagnosis? I suspect I have it. I’m having a hard time even finding an available rheumatologist where I live (fun fact, not “1st world”).
@dreamerstarchild
thank you so much! i run out of spoons often too, don't ever worry about responding quickly. i know it is exhausting to be in a toxic situation while also experiencing so much physical pain.
an online friend and i have been considering reading a chronic illness workbook and sharing our responses to the questions/activities together. i would love to share that with you as well. i also could likely benefit from a trauma workbook to help process some of what i've been through (both with my family and a partner who went to prison for what he did to me, lol).
there is also chronic pain anonymous (kind of like AA or NA but for chronic pain) if you'd think that'd be helpful. i also find the Visible app helpful for tracking my symptoms and pacing myself, though there may be better, more comprehensive options. the U.S. pain foundation has some resources too.
i don't know what kind of things you like to do, but i find that creating a list of soothing or engaging things based on my spoon level is helpful too. here's an example from mine
high energy:
- dye hair
- play video games
- bake cupcakes
- write letters
medium energy:
- read books
- spend time outside with my dog
- skincare routine
- make hot chocolate or tea
low energy:
- listen to podcasts or audiobooks
- cuddle with my dog
- randomize articles on wikipedia (this is probably a part of my autism lol)
- use a heating pad or ice pack
- watch videos of people walking through cities on youtube (especially in other countries; sweden walks are my favorite)
feel free to message me any time! i'm always trying to brainstorm distractions or diversions to get me through the hard times, but i know ultimately, what i need most is better medical care and connection/support. i'm happy to help you however i can or just share more of my experiences to let you know you are absolutely not alone.
for my EDS diagnosis, i had several of my first cousins get diagnosed first. my primary was able to diagnose me using the criteria chart for hEDS, but i've had trouble getting rheumatologists, pain management, and genetics to accept me since 2020. all of them shared they don't accept people with EDS after being on waiting lists. i've tried to save for the genetic test to rule out other types out of pocket. however, life has thrown me many curveballs in the last few years. :( for what it's worth i was diagnosed with fibro before EDS. if you wanna share more about your experiences, i can tell you if they align with what i know!
i hope this helps. thank you for your sweetness!!! don't let anyone tell you that you're not an angel and you deserve the best. sending all the good vibes and SO many spoons! it takes a ton of spoons to survive what you're going through so don't feel bad if you can't do everything all the time. golly how i wish public transport was accessible in rural areas.
@blanketbabe hope your day was good!
Thanks for being patient, these days by mid or end of the week I'm already running low on spoons.
I'm definitely interested in joining you and your friend in doing this workbook. Do you have any/one in mind? Sounds like a good idea for processing trauma (that's crazy that someone went to prison for what they did to you, I know it doesn't fix what happened but hoping you feel some sort of justice anyway). Having an accountability buddy for sharing responses will be fun.
I had not heard of chronic pain anonymous, how has your experience been? I also have Visible wearable but lost the charger :( it became a bit tedious for me also and I stopped using it a couple of months in. Maybe I'll think of using this again since my energy has become extremely low.
Thanks for the list of activities, I see some that I would like to do (youtube cities)! I think a couple of mine are:
high energy:
- yoga
- dress up/do my makeup
- cook a soothing meal
- art/crafts (oil pastels, junk journaling)
medium energy:
- be outdoors
- play with my cat
- tv/movies/video essays
- hammock time
low energy:
- listen to music or soothing sounds
- go on disability/neurodivergent support forums or pages
- lay with plushies
I appreciate you sharing and now I want to go randomize wikipedia articles, I used to go into rabbit holes like this all the time. I'm also looking for distractions and ways to get my mood up. Really glad that my sharing helped someone and has allowed us to connect.
Regarding your EDS, I'm sorry that you haven't found appropriate care. It must be very frustrating to have doctors say that they don't accept people with the condition. I mentioned to a doctor once that I think that I might have it and he basically dismissed me. For more context, I definitely pass the beighton test, experience dysautonomia, bruise a lot and joints cracked since I'm young. I don't even know if getting a diagnosis at this point would do anything. I have fibro/long covid but I feel like it's all related due to the connective tissue problems and research showing that neurodivergent/EDS is a risk factor for these. It's rough out here but hoping things get better or at least more manageable for you!
I call my close friends/loved ones little angels all the time so it's sweet that you say that! You deserve the best as well, I'm here for anything you need. We gotta take things one day at a time and give ourselves grace. Hugs!
@dreamerstarchild
no problem!! thank you for being patient with me. this week has been particularly challenging, but I've been thinking about you and looking forward to responding in the last day!
i don't have a specific one in mind. there's a couple free ones i found, but they weren't exactly what i was hoping for, especially because i find that CBT based practices aren't what work for me. DBT, mindfulness, EMDR, and art therapy have been a lot more effective for me. i'm going to keep looking this week for one that is inexpensive and maybe more comprehensive and diverse than CBT based workbooks. the one i originally started was called LAMP by Beverly Thorn, which is a free pdf on google.
chronic pain anonymous has been okay for me. i do like the connections with other members on zoom, but i don't like spiritually based practices since i don't really identify with a 'higher power.' i will let you know if i find another helpful app than visible. like i wish it let me track more than 3 symptoms at once because i have soooo much wrong with me, lol.
i love your list of activities! makeup used to be one of my favorite things to do, but my hands have gotten weak and imprecise, so now i just do enough to get by for work. pinterest and plushies are some of my favorite things! i love looking at fun decor on pinterest as well as some coping mechanisms.
video essays are SO good too. i am a big gameshow and video essay kind of gal, but my family makes it hard for me to listen or watch things except at night when they're asleep.
i'm so sorry about your doctor dismissing you. i had a few do that to me, but then i saw a brand new doctor - like just out of residency. she listened to me and validated me, and it made a huge difference in understanding what is wrong. i printed out a list of my symptoms and the EDS diagnostic criteria with notes on each symptom that correlated with my own. she listened to me, educated herself, and in the next visit, she diagnosed me. she took the time to study the condition which meant a lot to me. i recommend going to ehlers-danlos.com and looking at the hEDS diagnostic criteria checklist.
i have a 5 Beighton score, and i used to be able put my hands flat on the floor without bending and bending my thumb to touch my forearm. I've dislocated joints and have been double-jointed with use. i have the velvety skin, mild hyperextensibility, bilateral piezogenic papules of the heel, dental crowding with narrow palate, and arachnodactyly both positive wrist and thumb sign. i also have a positive family history, musculoskeletal pain, chronic pain, and recurrent joint dislocations.
besides that diagnostic criteria, i also have dysautonomia, crazy bruising, snap crackle popping joints, recurrent GI issues, seizures, autism, temperature intolerance, a heart murmur, and early onset arthritis. i am trying to get tests for MCAS now because i frequently have unexplained rashes and it is painful and icky! i do recommend getting a diagnosis because it impacts how doctors give anesthesia, antibiotics (absolutely no cipro for example), and PT.
i wish you the absolute best with everything! i am also happy to help research if there's any EDS specialists near you. there weren't any near me, but i know in the Midwest US and a few other places you can definitely get on a waitlist for specialized support. it really shouldn't be THIS hard, but us zebras gotta stick together. you definitely sound like me when i was figuring out i had EDS, and i would be genuinely surprised if you didn't have it based on your symptoms alone. FB groups also helped me out a lot during the diagnostic process.
i loveeee calling my friends sweet angels and you absolutely fit that criteria. <3 you are so sweet and gentle and already brought me peace knowing that i'm not alone in this scary time! one moment one breath and one love at a time. sending you spoons and love always! i'm here for ya!
Hi @blanketbabe ! Just wanted to let you know that I received and read your message. Haven’t been feeling well and wanted to reply more in depth when I’m in a better place. Sending hugs and good wishes for your day :)
Hi @blanketbabe ! Just wanted to let you know that I received and read your message. Haven’t been feeling well and wanted to reply more in depth when I’m in a better place. Sending hugs and good wishes for your day :)
I relate with alot of things yall are speaking of, im older now and terminal ill,have some insights to share if anyone is interested
Hi @imaginativeBalsam2922 ! Good morning, yesterday I felt very tired but glad to receive your message.
Glad to find someone who relates. I’m sorry to hear about your health, that really sucks. I know there is not a lot I can say, but I am interested in your insights and experiences if you want to share. Let me know what I can do for you.
@imaginativeBalsam2922
i am sorry you are experiencing this. i would absolutely appreciate your insight as well. thank you. sending hugs your way.