I am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…
I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.
The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.
Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!
I am feeling so incredibly stressed about my upcoming SSDI hearing and everything related to it. It has become an obsessive thought pattern that I can’t get out of. This always happens when something I am super nervous or scared about is looming on the horizon. My mind is a circular track of “what ifs”, incessant thoughts about things I need to do, fears that I will make a mistake and blow my last chance for SSDI benefits, and fear that if I fail and am denied again, it will once again send me into a suicidal spiral of feeling worthless, disbelieved, and like I will forever be a burden to society and those I love.
Tomorrow I have to ask my psychologist to fill out a RFC (Residual Functional Capacity) form for the hearing. I think she will be open to it and want to help, but I am still anxious about asking and scared of rejection. I have to ask my primary care physician to fill out a similar form when I see her next week, and am even more nervous about that because I know she is often rushed and I don’t want to be an inconvenience or annoy anyone by making demands.
As you can see, I struggle greatly with asking anyone to do anything for me. I’m not sure if it is just my lousy self-esteem or what, but I always feel like anything I need is an imposition on someone else. Maybe the result of being raised by a narcissistic parent? Growing up, I often was made to feel like anything I needed (emotionally or physically) was selfish and inconvenient to those around me. To this day, I struggle with feeling like I am actually entitled to anything – even basic human respect.
I think my fear of being disbelieved about my disabilities also stems from the fact that when I first started getting really sick, even my own husband and family didn’t believe me. My husband came around first, when he saw how much I truly was suffering every day and how even the things I loved most were being ripped away from me. He has even apologized for his initial doubts. Some of my family (including in-laws) still make me feel invalidated, but I’ve come to the conclusion I can’t do much about that.
Today has been a rough day 😦 I had to get up early to go to an appointment with my lawyer to talk about my upcoming SSDI hearing in February. I woke up feeling exhausted, achy, and sick to begin with, my stomach and digestive system freaking out from the anxiety of the change in routine as they always do.
The meeting went ok, I suppose. The lawyer seems really nice and genuine, but the whole thing depressed me. For one thing, it isn’t easy to have everything that is wrong with you physically and mentally just laid out on the table for everyone to see. It isn’t fun facing the reality of my own limitations and self-perceived flaws. I know I can’t help having mental and physical issues, but it SUCKS to have to dwell on them and think about them more than I already do normally.
The lawyer wants me to try to get my doctors to fill out some forms to take to the hearing and that gives me high anxiety. I hate having to ask anyone to do anything, it is just the way I am. I have a deep fear of rejection. What if they say “no” when I ask them to fill out the forms? Then I will feel even lower than I already do. I know my doctors are caring people who try to help me and they will probably be more than willing to help, but my brain just can’t shut off the “what ifs”.
I came home from the lawyer visit, cried for a little bit, then crashed for a few hours in bed. I still feel like absolute crud, but am trying to get back into my normal routine. I am desperately in need of some self-love and comfort right now, but that isn’t easy for me to do.
I found out recently that my Social Security Disability (SSDI) hearing has been set for February 2019. When I found this out, I contacted my attorney’s office to ask for a copy of my medical records since I honestly don’t even know what all is in them other than what my doctors have told me and what little is available on the online portals. I was rather shocked when they told me that they could give me the physical health records, but it is a HIPAA violation to allow me to see my complete mental health records.
To be honest, this bothered me. I’m not allowed to see some of my own mental health records? This doesn’t seem right to me. Maybe I could understand if I were violent or a real danger to others and they feared me getting pissed at what the doctors wrote and trying to harm them or something, but the closest I’ve ever come to violence is just having a meltdown and yelling at someone because I was overwhelmed (normally this has only happened at work places when I was put under a lot of pressure). Even yelling is pretty rare for me though. I am much more likely to just burst into tears, lock myself in the bathroom, or try to get away from the situation by finding another “safe” area where I can be alone.
Am I alone in being frustrated by the seemingly patronizing system hiding my own truth from me? Who else deserves to know my doctors’ real, honest perception of me more than myself? I’m not a child. I can handle knowing what my doctors really think of me and maybe knowing those things would help me in my own personal growth.
Yesterday I had rather a bit of a breakthrough moment. Now, to most people with healthy backgrounds and relationships, this will likely be a bit of a “duh” moment, but to people like me who were groomed to be codependent caretakers, it is an immensely important realization.
My “eureka moment” can be summed up in one sentence:
I don’t owe anyone ANYTHING, and no one owes me ANYTHING.
Of course, this does not mean that I can’t give to others out of the goodness of my heart, or that they can do the same, but none of us should feel required to do so. I would say the one exception to this rule would probably be children. If you bring children into this world, you do owe them something – and that is to do your best at providing them a safe, stable, and loving childhood. I guess pets fit that category as well. If you sign up to take care of something that can’t care for itself, you are essentially accepting that responsibility.
Outside of that, I’m not sure if any of us should feel like we have to fully take care of others emotionally, mentally, physically, or materially. We all have a responsibility to do our best to meet our own needs, and while that may mean reaching out for help now and then, we have to realize that sometimes we may be turned down and that is ok. If so, we just need to keep looking I suppose.
As someone with disabilities though, I do want to say that I do feel it is vitally important to have public programs and assistance available (whether these be government or charity systems) for those of us who sometimes struggle more than others at being “functioning adults”. To me, it is just a simple matter of society welfare and empathy that should strive to help anyone who falls through the cracks.
Last night I was thinking about my history of abuse and how I grew up seeing so much of it. As far as physical abuse goes, I did endure some growing up, but it was much more common for me to see someone else physically abused in my family. There was a “scapegoat” in our family who seemed to be the target of much of the worst of the abuse.
Thinking back, I remember how when this abuse would happen, I would scuttle into the corner or hide in a nearby alcove, but I never tried to actually leave the room. Common sense would seem to dictate that when violence is happening, you would want to get as far away from it as you can, but I didn’t even try.
I questioned myself last night why this was so. I came up with several possibilities. First, perhaps I was afraid to leave the room because I thought it would draw further attention to me. My main goal when violence would erupt was to try to become invisible. Sometimes the rage would boil over and the physical and verbal abuse would extend to me if I happened to get caught in the crossfire, so I naturally tried to fade into the shadows. Sometimes, early on, I would try to distract and please the abuser in hopes of calming them down, but that never really worked.
Another reason I think I stayed to watch was because deep down I feared for the safety of the scapegoat and I wanted to make sure they didn’t die. There may have been some morbid curiosity tossed in there too, the way that human nature makes us crane our necks to see what happened when driving by a car crash.
Lastly, I think I stayed and risked my own safety because I felt responsible for trying to make peace after the explosion. I hated to see the division in my family and the anger and pain created by these confrontations. After the worst of it was over, I would often go to the victim and try to comfort them, and then I would even go to the abuser and try to comfort them. I would try to mend the rift between them, although obviously looking back with adult eyes, I see the utter futility of my efforts and sometimes feel anger that I felt responsible to hold the family together in the first place, as I was so little at the time (elementary school age).
This post will contain a collection of short journal entries I wrote recently about what it was like emotionally to grow up with autism. These thoughts specifically dealt with bullying and (for me) the most confusing time of adolescence, which was middle school and the beginning of high school. By the last couple years of high school I had figured some things out and learned how to “pretend” to fit in a bit better, even though deep down I still felt like an oddball.
I hated always being the butt of the joke – even among friends. I was naive. I was gullible. I was trusting. Too many times I was set up for humiliation or embarrassment.
In an effort to avoid this embarrassment, I quit trusting anyone. I quit taking anyone at their word. I became suspicious. I struggled to identify sarcasm, so I started assuming ALL was sarcasm unless I knew someone well enough to tell the difference.
Due to this struggle with recognizing sarcasm, how many “mean” comments did I take to heart that were meant in jest? How many cruel words that cut me to the core, were never even meant to be cruel? When boys would say they liked me and I would take it as them mocking me and choose to ignore them or laugh at their “joke”, did I instead end up hurting their feelings in an effort to save my own?
Bullied for my weight during middle school, accused of having a lack of “feeling” or frustrating others who thought I didn’t care about anything because I suffered from selective mutism under stress, constantly feeling reminded that I wasn’t “feminine” enough – this was much of my teenage experience.
The common thread throughout was that I unknowingly made myself a target for abuse. The way I dressed. The way I talked. The way I acted. I was so desperate for acceptance and approval, but I reached for them in ways that were socially unacceptable to those around me and ended up only painting the bulls-eye larger on myself.
A few of you seemed like you wanted an update about how my husband’s birthday party went yesterday (if you didn’t read my post yesterday, you can find it here). Most of the really bad nerves happened before the party and on the way there, which is pretty normal for me. I had an IBS attack about a half hour before leaving the house (nausea, diarrhea, cramps – the whole shebang). On the drive to the party, I noticed my right leg was shaking pretty bad (a sure sign of anxiety), which made driving even more uncomfortable.
However, once I arrived at the school, it didn’t go too bad. Checking in at the front office wasn’t nearly as scary as I had imagined, although the receptionist was kind of grumpy. They had me stay in the office until the party was ready, as they wanted to surprise my husband. When they were ready, I joined the kids in my husband’s class and his assistants on their way back to the classroom from music class. We all got to my husband’s classroom and sang Happy Birthday to him and had some cupcakes. There was a ton of other food there as well – a huge assortment of candy, an amazing cream cheese peanut butter cake, chocolate covered pretzels, chips and salsa, and more.
Meeting my husband’s assistants (and a few other school employees) went ok. They were nice and friendly, although I did feel pretty shy. I had to ask my husband a few times if they were kidding or not when they said certain things, because I genuinely have a hard time deciphering whether people I don’t know well are being sarcastic or for real when they talk. One of the highlights of the party was meeting one student’s therapy dog. Meeting people fills me with anxiety, but meeting animals is always pure joy! I also got a couple hugs from my husband’s students, which was sweet.
After the party I was definitely relieved to get back home, but proud that I went. I know it meant a lot to my husband, so it was worth it.
Today is my husband’s birthday. At his work (he teaches special education), they are holding a special party for him this afternoon and his coworkers reached out to invite me. I am going to go, but I must admit I am nervous. I’ve never actually met his coworkers since they are fairly new, so that is a little intimidating to me (having to meet them all at one time).
For some reason, I am super nervous about having to go to the office to check in as a guest…I know I am 35 years old and it is kind of ridiculous to be nervous about something so simple, but I am what I am. I am also worried about the drive, because it is about a 40 minute drive and that is way out of my comfort zone as far as driving goes.
I must admit when I first heard about the party, my first instinct was to say I couldn’t make it. Anxiety is a powerful force. But in the end, my love for my husband won out and I want to be there for him more than I want to be comfortable or free from anxiety. I guess love is an even more powerful force…