#and i don’t doubt she feels horrible and i know she has intrusive thoughts etc | Explore Tumblr Posts and Blogs

disabledunitypunk · 1 year

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Hi, I don’t know if it’s okay to ask this here so please ignore if it’s not okay or anything! And I’m sorry ahead of time for rambling/this being all over the place.(I’m also sorry for how long and overdone this is)

I’m 20 and I have PANS(Pediatric Acute-onset Neuropsychiatric Syndrome) and have had it for over 5 years. it’s mostly neuropsychiatric things like OCD, tics, fatigue, brain fog, memory loss, and way to many symptoms to name but I also have an autoimmune disorder and I have a lot of co-infections like really bad Lyme, Bartonella, H pylori, and several other things. Along with horrible chronic joint pain, fatigue, anemia, babesia. Just so much I can’t name. (Good news though! I’ve just started the H Pylori treatment, 2weeks to go!)

Anyways Last March I randomly started having trouble walking/started walking funny and by the next morning I couldn’t walk unassisted and kept falling. I’ve been in a wheelchair ever since and doctors have done every single test possible:mri of the spine/hips etc, EMG, brain mri. And they’ve found nothing to explain it which doesn’t really surprise me, I’ve been chronically sick like this for 5 years now, I had pans for several years when I was a child too.

My mom is my main caregiver, she’s also a nurse and so she’s been advocating for me and with me all the time I’ve been sick and she’s been helping push the doctors for me to get IVIG which could hopefully clear up the pans and reset my immune system(it’s like the ‘main’ treatment), but to be honest I’m terrified. I’ve been sick for so long I don’t know what it’s like to be well anymore. I don’t know who I am if I’m not like this, and (god it sounds so bad when I say it) I’m not sure I want to get better. I don’t like being sick or that my family has to see me like this, but I can’t imagine a life where I’m not sick. Where I’m not in a wheelchair or using my cane. I don’t like feeling the way I do, most days I’m miserable and have trouble getting out of bed.

It’s not that I’m only slightly sick, this is horrible and it has been for the years I’ve been like this. And it’s not that I’m just wallowing or anything like that, I can’t tell if it’s just fear of the “unknown” or if I genuinely don’t want to get better. I’m just trying to figure out if my fears and thoughts are stupid or if im just crazy for not wanting to get better.

I know I should want to and I kind of do but I just feel so bonded/tied to my illness/disability that I don’t feel like it’s possible I could get better. And I mean even with the treatment it could take months or longer to get better so it’s not like it would be immediate and I have to wait for insurance and other things to approve it. I know it’s helped so many people who have the same syndrome as me I worry it won’t work. Or that it won’t work for everything, I doubt it would work for my walking problem but my mom thinks it will. I think i just don’t want to try but I don’t really have a choice, my mom would be disappointed if I said I didn’t want IVIG and I’d have to explain all of this to her and it wouldn’t make sense to her she’d think it was my intrusive thoughts or anxiety or something.

I just don’t know what to do, I’m scared/don’t necessarily want to get better and try this treatment but I feel like I have to and I’m upset with myself for not wanting to do it because I’d feel like I’m letting everyone and myself down by feeling this way and even thinking about not doing it and not getting better. I have a lot of trauma with my health and this could be part of that I just can’t make sense of how I’m feeling right now. I know I sound crazy, I just thought maybe an outsiders perspective might help. I just feel like I’m going crazy, is it wrong to feel this way?

It’s definitely not wrong to feel apprehensive about treatments. That is first and foremost your body and your choice. Treatments and “cures” are are not such a black and white concept as they are in media. We know many people who chose not to be treated for one reason or another and that is a choice that no one should be allowed to take from them.

For many disabled people a cure sounds less like a blessing and more like a curse. Some of my conditions are so integral to me that I wouldn’t accept treatment for them even if there was one.

If you do not want to have the treatment you should not have to have it. Bodily anatomy comes first. If you truly do not want to get better then that is okay.

One thing I like to do is weight out the pros and cons. And then go through each one break them down.

For an example: the treatment would take months

the time will pass anyway so what would it hurt to try?

but you might not get better

worst case scenario: the treatment does not work and even makes certain things worse

best case scenario: the treatment fixes everything

likely scenario: the treatment helps with certain symptoms but not all of them

Can you live with the worst case scenario in hopes that the likely scenario is true? Or is it better for you to continue as you are? Are you okay with not getting the best case scenario? Are there ways to mitigate risks?

It might help to talk to others who have had IVIG to get a realistic understanding of how it might affect y you and if it is worth it. They probably had similar worries or can answer questions that you have.

You are not the first disabled person to face the dilemma of whether or not to accept treatment and you have a right to refuse treatment for any reason. You are not alone. You are in good company.

I hope something I said in this mess of a post is helpful to you and I hope tomorrow will be kinder to you than today. Good day and good luck.

-Mod Cloud

#unitypunk #mod cloud #ask to tag #anon answered

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pure-o-soft · 5 years

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Hi, sorry if this come across as disrespectful to anyone, but what's the difference between HOCD and homophobia/internalized homophobia? (I know that they *are* different, but I don't know how; no disrespect is intended to people with HOCD)

Hey lovely!

No need to worry it doesn’t come across as disrespectful :) one purpose of this blog is to help educate! The different themes of OCD aren’t talked about much, so asking questions is awesome!

The two biggest differences between them, is someone with HOCD is not actually attracted to people of the same gender and someone with internalized homophobia is actually attracted to people of the same gender. And HOCD is a mental illness/disorder, whereas internalized homophobia is an unfortunate product of oppression (but of course, anxiety and depression can develop from it). I’ll explain a little more!

HOCD, as I mentioned, is just one theme that obsessive compulsive disorder can manifest as. And it’s not solely for straight people either. HOCD is otherwise known as Sexual Orientation OCD, because a gay person can have an obsessive fear that they’re straight. An asexual person can have an obsessive fear that they’re allosexual (or one allosexuality in specific). So on and so forth. HOCD is actually an anxiety disorder, and it commonly looks something like this. Someone will get an intrusive thought, for example, a girl gets an intrusive thought (an unwanted and uncontrollable thought) of her kissing a girl she saw on the street. Instead of brushing it off, like someone without OCD would do, she then starts to obsess about it: ie “why did I picture that? Do I actually want to kiss her? Does that mean I’m gay?” This obsessing causes a lot of anxiety, and in order to relieve the anxiety, people with HOCD will do compulsions like reassurance seeking, checking, avoidance, rumination, etc. The obsessing and doing compulsions can often go on for hours every day, and begins to get in the way of their daily tasks and affects their quality of life. OCD is actually called the “doubting disease” and a lot of people with HOCD worry that they have internalized homophobia and they’re in denial.

Someone with internalized homophobia finds pleasure in their thoughts and the idea of being with someone of the same gender, but they may feel shame or denial afterwards. And of course people with internalized homophobia also experience a lot of anxiety in regards to how people will think of them, if they’ll be safe, etc. I don’t know much about people that suffer with this, so I’m sorry if I’ve missaid something, but it has little to nothing to do with the cycle of intrusive thoughts, obsessing and compulsions. Ultimately, the two are caused by different things. HOCD is a mental disorder, and internalized homophobia is caused by homophobia in a person’s home life, school, society, etc. that they’ve internalized. It’s a very horrible form of oppression.

I hope this answers your question completely! And again, questions are a great way to educate people on these subjects, so thank you for asking :) hope you’re doing well

#hocd #asks #anons #internalized homophobia

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trigger-happy-psycho-blog · 7 years

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HELP PLEASE

I put this under as many tags that have to do with mental illness as possible so that I may have the highest probability of finding/attracting someone who can help me get an idea of what is wrong with me. Let me just start by saying I absolutely hate self-diagnoses. Unfortunately, asking my parents to take my to a mental health professional is out of the picture (my dad wouldn't take me seriously/treat me like an animal, my mom would pretend she could take care of it/not care.) So I'm turning to the therapists/psychologists/psychiatrists of tumblr to help AT LEAST give a ballpark of what I might have because this has bothered me all my life to the point where I can't stop thinking about it ever. And hey, maybe I'm just neurotypical, which would be freaking AWESOME. But I can't help thinking that I'm a freak or something until I get assurance from someone who knows what they are doing. So here are some things about me that may help: - I'm kinda unemotional. I mean I have emotions but I basically don't show them. - I'm very socially awkward. I was selectively mute until I was 12 or 13 and I am still very shy. Even when I do talk to people, my speech is weird (unless I know them really well.) - I often have obsessions with different subjects. Like for a while it was ferrets, then it was personality types, random theories, etc. Mental illness is the biggest one though. Also, when I start on something, I don't stop until I'm done. It's like tunnel vision. - I have this weird thing where I always need to know the time even when I like JUST checked the time I still need to check it for some weird reason it's kind of annoying. - I get intrusive thoughts like all the time. - I get like weird feelings that make me tense up and make weird faces. Like I HAVE too move my face/body part in a certain way to get rid of it. It makes me make weird faces and stuff - I have trouble making friends. Everyone thinks I'm weird and I've had like.... 4 friends in the past 15 years. - I HARDCORE believe in dragons. No sarcasm. I'm starting to doubt it but a few years ago I was 100% sure they were real and everyone was stupid for thinking they were fake. I also believe that demons can speak through my mother and that I am LITERALLY cursed with having no friends. The thing is, I KNOW these are weird things to belive and I STILL believe them.... - I pick the skin around my fingers EXCESSIVELY. - I often feel as if people are talking about me or laughing at me or just dont like me in general even if there is literally no reason at all for me to believe so. - I'm very smart. As a freshman, I took Calculus. That's just an example. - Sometimes this thing happens where I start thinking and it's like a train is going through my train and I can't stop it and it feels like I'm drowning in thoughts and I can't breathe or see or stand and I start shaking it's horrible but addictive. - I get these days where I just feel like my whole being is a weight and I don't want to do anything. - I've cut myself before. The weird thing? I didn't it because I found it fun and I liked the blood. I felt the pain but like there was more comfort in it than anything else. - I have panic attacks/Anxiety attacks. - I'm uncoordinated. - I'm VERY conscious about my surroundings and stuff. - Sometimes I just... shut down. Like. I'll just stop doing everything and I'll jusr stand there. For no reason. Like I will forget how to move and speak. - Sometimes I hear my name when no one is calling me and I'll see shadows out of the corner of my eye??? And sometimes things will appear darker than they were like a moment before. - I'm not lazy. I'm pretty hard working actually. But I'm not exactly organized lol. - There are words/things HATE using/HAVE to use in writing for no reason. Like I have to use "probability" instead of "chance." I had to use quotations around both of those words. Etc. - I LOVE routine. This post is an example. Every bullet point has to have "-" and then a space and the first word has to be capitalized. In the car, I always have to sit on the middle seat in the back. If I leave at 3:00 the first day, I will have to leave at 3:00 p.m. the next day. If I accidentally leave earlier, I will go back until 3:00 p.m. and then leave. Etc. - I am TERRIFIED of the dark. I have very vivid nightmares. - I'm able to predict some things that happen through dreams sometimes and sometimes I'm able to like predict what song will be next on the radio. This is not just a coincidence like it's happened SEVERAL times on accident. That's all I can think of for now. Feel free to ask questions or to ask me to elaborate. Also, please repost if you can think of other tags that can attract people. This is a VERY distressing matter to me. You have NO idea. This like took over my life and I'm trying to get it back. Thank you so much if you read the whole thing. ~Lex~

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