Needing social connections

Ever since I got Lyme, or rather since Lyme became chronic, I’ve felt socially isolated. In truth (as I’ve said before on this blog), I was socially isolated even BEFORE Lyme, because I’m on the autism spectrum and never really wanted friends growing up. Around the time I got Lyme was when I started to get interested in connecting with others, and that need became much more pressing when I started to feel trapped in my own “personal hell”, dealing with something my peers couldn’t understand, and that kept me from enjoying life the way I wanted to as an adolescent.

Very close to a year ago, I had the first romantic relationship of my life. I’m actually wondering whether, looking back, I will in fact consider it a romantic relationship, because not only did it only last a little over a month, but less than halfway into it there were already signs that we weren’t compatible. As soon as the excitement of “I finally have a girlfriend!” from our first date began to wane, the clashes started showing up. It was in any case far more of a romantic relationship than anything else I’ve ever had, as in middle and high school I didn’t date at all, and then by college I was already deep into Lyme. When I started to go to aspie groups, there were a few girls who were interested enough in me to try dating, but I was playing along just because I was desperate to try and not because I found them at all attractive. Conversely, all the girls I had crushes on showed no interest back.

From the ways we weren’t compatible, I learned some things. Firstly, I learned that I don’t do well in a relationship with another person who also has what I would call “control issues”. What I mean by that is a need to constantly be in control and/or to self-direct things to an extent that it sometimes gets in the way, when getting true strength and confidence means being open and/or vulnerable enough to truly self-examine and/or to seek and accept help. These are the people who stay up even when they feel tired because of all the things they want to do, who hold in natural bodily functions, who always insist on doing things their own way, who always have to “be right”, etc.

I myself often have real difficulty accepting guidance in my life from anyone who I feel (whether or not it is actually true) is not aligned with how I already see myself and where I need to go. While this has helped me avoid things like peer pressure and enabled me to remain “true to myself”, there have been cases where my inability to even slightly question my own self-chosen path kept me from solving certain problems relating to PANS and life in general. Therefore, I benefit from being around people who appreciate my need to be self-directed, but who can help me learn to let go and step into the unknown more, and can allow me to see that accepting the direction and help of others sometimes doesn’t mean I can’t still be myself.

This girl I dated has some of those same control issues, and it drove me crazy because I felt like I was fighting both her and myself at the same time. Plus, I tend to gravitate toward the “teacher” role in life in general (I tutored math before I got my current job), and being around people who seem “unteachable” doesn’t help me feel secure in my own identity. She constantly told me how smart she thought I was, yet I would have *felt* much smarter if instead of the constant lip service, she actually followed in my footsteps and took my advice once in a while. I have found that it’s common among autistic people to have these issues, and she’s also on the spectrum, but I hope there are some who aren’t like that.

Just as importantly–if not more so–I need people who respect all I have been through in my struggle with Lyme/PANS. There was a time where I pointed out to her something that I thought she needed to get checked out about her own body, and eventually she agreed to do it, but after the first appointment where a doctor told her it was “nothing”, she gave up and refused to continue. She had no clue of the perseverance I’ve had to have to get as far as I have with my own health issues. It became so clear when I went to a Lyme group, and was talking to another guy about my age who also has Lyme. He actually found my theories about how my Lyme is affecting me interesting, even if they were different than his own–he was in no way dismissive and he made me feel validated in having taken the time to figure this all out. Whether in a romantic relationship or just a friendship, this is something I really need.

This brings me back to the lack of opportunities to meet others in a purely social context who are also dealing with PANS/PANDAS/Lyme. I have been to Lyme groups in person, but all anyone ever does there is talk about their Lyme, what medications or herbs they are using, and what doctors they are seeing. I’ve only been involved with PANS/PANDAS groups online, never in real life, but they are the same way. And just typing text is nothing like seeing a face, and having someone you can actually hang out with and do something fun when discouraged by chronic health issues.

The mental health issues that come with something like PANS aren’t like lower back pain or skin rashes, one’s personality and cognitive and emotional traits going in have a LOT to do with how brain inflammation manifests itself in emotions, bad habits, etc. Even though PANS can change one’s personality, it also acts as a magnifying lens to one’s own mental weaknesses and brings out pre-existing tendencies big time. So the fact that I was a huge loner math and science nerd before PANS makes my experience fundamentally different, and gives me very different issues, from that of a social butterfly who had a wide circle of friends, or that of an athlete who derived confidence from pushing his or her own physical body. So I don’t just need help with PANS treatment, I need people who understand my bad days but who also can be friends in helping me through the mental/emotional issues around life more broadly.

Back after a break

Here is the big “What’s new” post I referred to in my last post. A lot has changed in the past two years–in particular I graduated with a Master’s degree from the university where I was for graduate school, and I moved back to my hometown. I’m working part-time in a research position now, and have made some significant strides in understanding some of the mental traps I was stuck in.

One big mental knot I was tied in had to do with my perception of my own capacity for work. Somewhere back in my whole Lyme journey, it became much more difficult for me to remain focused on the details of work for extended periods of time–I guess you could sum it up with the phrase “executive function”. I retained the ability to think in “big ideas”, and the ability to for instance process a complex diagram (these visual things I had always absorbed in a “gestalt” sort of way), but painstaking details like grinding through many steps of algebra, writing complex code, things like that, it would take me forever to sit down and actually start doing them, and then I was very easily distracted. After I went on 5-HTP, this improved considerably, and in my master’s work I got a lot of practice overcoming this, at least as it pertained to more routine work. It’s still not where I ultimately want it to be, though.

Having absorbed this fact about myself into my subconscious profoundly influenced the attitude with which I approached finding research groups to work in, even once it was becoming less true. I would immediately analyze their approach to work, looking for things I thought they were doing “right” and things they were doing “wrong”. Then on some level I saw my main role being to tell them what they were doing wrong, because anything they were doing right they were probably already doing better than me anyway, whereas by taking things in a new direction I would get credit for that. While some scientists in fact found my ideas interesting, needless to say, not many groups like to be told what they are doing wrong, especially by someone who just talks and doesn’t get much done.

I also have a tendency to be hyper-ambitious and try to do things that “no mere mortal” could actually accomplish, and then when they don’t work out, place the blame on things outside of myself for my inability to get anywhere, not realizing it’s partly or even mostly my fault. I’ve always had this to *some* degree, but PANS has made it *much* worse, to where it has practically been the central thread of my life.

My current research position is doing work that is far below my ability, knowledge-wise. It can be depressing because even the people highest up in the lab don’t seem to be doing work that could really use my skills. On the other hand, while at times it can be quite time-consuming, I can get it done–and this in and of itself has been quite helpful for me. Just the act of finishing work chips away at that dread that has kept me from actually *doing* things rather than just *thinking* about doing them. That has helped me in my spare time as well, when working on my own projects.

I have gotten to the point now where I am more self-aware of when I’m unable to complete something because of my own block around getting things done, or when I have chosen something too hard, and rather than lay blame, I work to get through my own blocks. I have begun to see how many times in the past when I felt ready to take on large challenges, it was more that I was in a mood where *imagining* doing work was easy, than it was that I was in a state of mind where I actually could get it done.

I’ve also discovered a bad habit I got into that was making things quite a bit worse, and that is eating sweetened energy bars. I started eating them not too long after I started my current job, because sometimes I was still very hungry after eating the lunch I brought that satisfied my dietary restrictions, and I didn’t want to leave early, so I would pick up an energy bar in the cafeteria. I recently discovered that they make me much crankier and easily frustrated by things.

They also interact with other stuff–like I often drink a beer or two in the afternoon/evening (I’ve gotten in that habit as a means to get away from feeling lousy), and after those bars I noticed that alcohol would in fact make me feel much *worse*. I would often drink more to try and compensate, but it would only compound the problem, since it also has carbs. Once I cut out these bars I felt better within just a few days. I also discovered that of many of the other vegetables and starches that I began to tolerate last fall, I still have to limit them or else the natural carbs in those do the same thing, but to a lesser extent than the energy bars. Now that I’ve identified this, I hope my executive function gets better still.

 

 

Expectations

I know it’s been a long time since I’ve posted. I’m actually in the process of writing a new post that discusses all the things that have happened since I took a break from this blog–which is a lot. However, just today something specific happened that I want to write about. There’s a town not too far from where I live that has a yearly gingerbread house contest in December, where one walks from business to business looking at elaborately made gingerbread houses. I just discovered this last year. Of course, everything in town is decorated so the walk is nice just for that. Also, on one day they have a parade of decorated boats, and that happened to be today.

First a little background about the holidays, and my feelings about them. I feel that since having Lyme, since there has been so much that seems to have been taken *away* from my life and so many “little things” that I can’t enjoy in the same way, there is this need I’ve developed to deliberately do things to escape into a world of “holiday magic” around Christmas time, and have things “be like the old days” as much as possible. With this comes putting more importance and meaning on being happy around that time of year, on having things be “perfect”, and therefore also more potential for disappointment when they don’t happen the way I had planned them.

Last year, despite the fact that I was in a better place healthwise than I’d been for many years, the holiday season brought on such a feeling of “lackingness” that I regressed in my outlook for many months. I just focused on the negative and did things like drinking more even when it made my gastrointestinal issues worse just in an effort to try and feel more in the mood for the holidays–and then due to other things happening, I stayed stuck in this negative pattern for many months after.

With that background, you can understand that I was both excited and apprehensive having a “second chance” with the gingerbread house contest–although last year’s visit to the contest was one of the best days of the holiday season. Last year, when I told my parents about the event, they invited some friends of their own, and not only were some of the gingerbread houses very creative, it was great to for once experience being with “normal people” and actually having a common purpose.

This time it was just my parents and I, yet I knew very well to drive in separate cars so I could do whatever else along the way that I wanted to do and they could do what they wanted–we would only get together when we were ready. I stopped in the town where I grew up and saw a few old places. They stopped to get something to eat at a restaurant, something I still can’t do with my food sensitivities.

Then right after seeing the first gingerbread house, it started to rain. I have always liked rain, and there have been times I have been disappointed at the lack of it. I don’t mean that I like walking for half an hour in a nonstop heavy downpour, especially not without an umbrella–I mean like a light rain when walking in an area with some trees or buildings overhead, or a heavier rain that starts a few minutes before I get indoors when I have an umbrella, just enough to make it feel like an “adventure”. I hadn’t expected rain for today, it was actually supposed to be the first dry day this week, but when it started it was a pleasant surprise because it was just enough to make the atmosphere feel that much more special.

On the other hand, my parents were less than thrilled about walking in the rain. My dad wanted to get an umbrella before the parade, and my mom insisted on waiting for him, meaning I was alone walking to see the remaining gingerbread houses. Furthermore, due to my parents having taken a long time to eat, half of the places participating in the contest were closed already. In hindsight, I should have gone to see the gingerbread houses while waiting for them to eat. But most of all it might not have mattered, because half of the ones I DID get to see were VERY underwhelming–nothing like last year.

I did get to see the boat parade, which I didn’t see last year because I had to leave early for work, and got some nice pictures. Although, I spent a lot of the time trying to call them to meet back up and my dad didn’t answer–I often wonder why he even has a cell phone because he never can be reached on it.

After this I spent a long time thinking about expectations. The best part, other than the parade, was when it started raining, and that wasn’t something I had expected. That experience–of getting to walk around and look at gingerbread houses in the rain–is something nobody can ever take away from me, that I can’t ever be disappointed about NOT having. The same is true about having seen the good gingerbread houses last year, and having seen the parade today. What is too much to ask is that everyone else share my idea of what experiences are fine to skip and which are must-haves, as they have their own expectations and ideas as to what makes a perfect evening. Coincidentally, when I logged in to start writing this post I saw this one from “the aspie girl blog”, which is about the same concept: https://wordpress.com/read/blogs/110971437/posts/509

The thing is, that even if my parents HAD been the type who would have walked fifty yards across flaming coals barefoot in order to see gingerbread houses, that still wouldn’t have changed how underwhelming many of the year’s entries were–yet somehow it *felt* in my mind like they were responsible for “ruining it”. I had a similar experience again on the way home–I had stopped back in the town where I grew up to see their downtown Christmas lights, and was very irked to find that the town was SUPER crowded and I had to go far away to find a parking space. Yet when I got out of the car, it was too cold and windy there and I ended up going to another town where there were also more lights and parking was easy. In addition, it occurred to me that I was only in some sense *able* to feel so picky about how the day at the gingerbread house contest turned out because in general I was doing better than was years ago. I wasn’t full of anxiety, I sleep quite well these days, etc.–in the past, the absence of those would have been “special” in themselves.

More generally, this seems like a metaphor for much of living with Lyme/PANS/etc.–it’s easy to get “greedy” when one starts to feel better and expect “miracles”–however this tends to lead to disappointment and dysfunctional coping strategies that end up setting one back again. I don’t mean one should stop fighting and accept never getting better, but rather that celebrating the improvements that DO happen is often more helpful than stressing out over those that don’t. And there have been a LOT of improvements in the past year, some of which I will go over in my next post.

 

Is nihilism is the true core of 2A?

 

I just saw this video because a Facebook friend posted it. It shows a world in which everyone carries a gun, where trifling disputes end in everyone pointing weapons at everyone else. And at the end, someone’s gun accidentally fires, which results in a bystander getting wounded. The others say this is “the price of freedom”. Obviously this is supposed to be funny, but I couldn’t quite laugh at it, and a little thinking got me to the reason why.

I’ve noticed before that after every school shooting, I can’t bring myself to feel angry at the shooter. It’s not that I like violence or anything of that nature, it’s more that growing up, I had quite a few behavioral issues that, had I not overcome them, could have led to me “snapping” in this sort of way. So I feel a great deal of empathy for the shooters.

Yes, I feel empathy for the victims, too, but my capacity to empathize with them is very much strained by the hateful comments I hear from the victims and their allies about the shooters, and about people with mental illness in general (or at least, people who could be considered to have one). This “villainizing thinking” erodes my sympathy for the victims, yet the shooters rarely villainize the victims after the event is over, no matter how angry they were when they snapped.

Also, there’s sometimes talk of how the souls of the dead are begging us to do something about what happened, and part of me says “how do you know that?” Even if you could prove there are such things as souls, you don’t know that wherever they are they even care.

On the other hand, if I follow my “gut feeling” to its conclusion, then you ultimately get to a situation where someone with a mental health issue (due to something like PANS, Lyme, or whatever) can never be blamed for anything. And of course I don’t want a world where the state has total control over such people, and can lock them up whenever it feels like, can monitor their every move, etc. So putting these together logically, you arrive at a world where when someone with mental health issues harms or even kills people, the official response to the survivors, the families, etc., is “Well, I’m sorry for what happened to you, but that’s just the price of living in a world where people can ‘snap'”.

It would be a sort of “mental socialism”, where everyone has to equally bear the brunt of everyone’s mental issues, yet nobody has any real power to do anything about it. And in fact, like the guy without a gun being blamed in the video, the blame for something like a school shooting might be placed on someone we would consider “healthy”, for provoking the person. It would be a world where everyone is always walking on eggshells, yet uncritically accepts this and never does anything about it.

And the weird thing is, on a raw emotional level the idea of such a world actually feels kind of normal and acceptable to me. I’ve even wondered before if I could be a psychopath because of this, but I’ve heard that actual psychopaths don’t ask themselves if they are one. I think it’s more that being 2A, I’ve been emotionally isolated from others so much of my life that I never developed the same emotional responses that others have to things. This is further amplified by the KBS-like way that neuro-immune issues show up in people like us.

Even when I’m not particularly anxious or even depressed, this “blankness” is still there. And it’s not total absence of any meaning–things like the beauty of the universe and nature hold deep significance for me. It’s just that within the world of people, I feel there is this void there, that never completely goes away even when my PANS symptoms are at there mildest, and even when I’m the most motivated in my own life. I’m wondering if any others feel the same way.

 

I need a chronic illness Skype/video chat group

I’m not a person who likes written text. Not when it comes to providing emotional support–for reading scientific results and the news it’s fine (though even in science I’m a very visual person). Despite being on the spectrum and missing a lot of cues, I’m an intuitive person, who “resonates” with certain people and not others.

I have a recurring experience in chronic illness-related Facebook groups and the like. I’ll exchange a bunch of messages with someone, and then ask if they are willing to video chat somehow. That’s about when most people stop responding.

I think part of it is that people compartmentalize their lives. Quite a few have full “real life lives” even despite their illness, and then come to chronic illness groups and start acting like walking illnesses that just happen to have people attached to them. Whereas I’m there primarily for a completely different reason. I’m there for human connection with someone who understands what it’s like to have over a decade of one’s formative years “stolen” from you. I’m looking for a connection that, even if it’s with someone on the other side of the world, might become closer than any connection I have with anyone in real life, because that person “gets it”. And to feel that, I need more than words on a page.

I’m looking for people who will actually “be there” with and for me–not as some kind of case studies in chronic illness like in a doctor’s office, but as actual, rounded human beings. Human beings who have seen their old friends grow up, progress in their careers, and in some cases get married or even have children, while they are still living at home with parents or trying time after time to finish college. People who “dropped out of life” for years at a time, but are still searching for meaning. People who at times feel so “invisible” in the world of healthy people, their “real life lives” are mostly devoid of emotional sustenance, and so are happy to pursue something close to friendship with people who are in the same boat, by whatever medium is necessary, even if it’s a bit awkward at first.

Some things have changed, others stay the same

Early last winter, I made an important discovery. My body seems like it almost certainly had a severe difficulty converting tryptophan to serotonin, which had profound effects on my gastrointestinal function and my emotional/cognitive functioning. I am now taking 5-HTP, which is more readily converted to serotonin, and within less than a day after starting it, I already noticed significant changes, in particular my attention span dramatically lengthened.

When reading, I used to have to get up and pace around every few minutes, almost couldn’t focus on something without having music playing, and was perpetually antsy. I have realized that this was contributing significantly to some of the difficulties I’ve had in my academic program. I have always had lots of ideas, but never got much concretely accomplished. I attributed this to my thinking style and personality, that I’m creative and imaginative and have never liked mundane activities. I also attributed it in part to all the things I am frustrated about in my life, i.e. when there feels like so much missing, I don’t have the patience doing drudgery.

However, back in high school I used to be able to spend significant periods of time reading things for classes like history and English that I wasn’t interested in. Now I have gotten closer to that again–at least on good days I can really focus. I’ve been doing a research project this semester that required WAY more organizational skills and focus than anything I’ve done before, and yet I made it without too much difficulty.

I’ve also noticed that my gut doesn’t feel “stuck” like it always used to. After eating, it gurgles softly, it doesn’t feel like there’s a lump just sitting there. Also, I had developed a HUGE appetite for protein over the years, and now I have days where that is much less extreme. Now I can get by eating smaller meals a lot of the time, which also gives my gut more of a rest in between.

I also have significantly fewer moments where I feel incredibly bitter about my life out of nowhere, to the extent that it prevents me from getting anything done. However–and here’s where we start to get into what has NOT changed–a lot of the same things in my life that have been missing are still missing. I still feel like the only kid among adults a lot of the time. I still wonder when I will ever meet a girl who is at a similar stage of interpersonal development as I am, who has a similar level of (in)experience and is as impatiently and eagerly awaiting me as I am looking for her.

On the more health-related side, my food sensitivities aren’t much better either. I’m still stuck eating the same ~5-6 things over and over, and of the two foods I started reacting to last fall, I’ve only partly lost sensitivity to one–I’m in fact MORE sensitive to the other now. So I still can only eat at home or bring food with me–it would be hopeless to eat in a restaurant/cafe. I’m hoping some of this will improve over time, but I don’t know if it will.

Also, a big life change is coming up. I’m hoping it will get my life more on track and not more off, but I’m not sure.

The Facebook PDA group

After some conversation with the leader of the Facebook PDA group, I have decided to edit this post to be fairer to them, because I was jumping to some conclusions that were not entirely accurate. Anyway, this is to discuss my experiences with the concept of pathological demand avoidance (PDA).

What still stands is that the “PDA community” (likely as a whole, although the Facebook group “Adult PDA Support Network” is my only contact with them as people) consists primarily of people who don’t meet the criteria for autism or Asperger syndrome, even though many people with autism or AS deal with the same sorts of issues. In other words, there are people (let’s call them “Group 1”) who have demand avoidance issues, “Group 2” who have classical aspie tendencies but NO demand avoidance, and “Group 3” who have both. The “PDA community” is largely Group 1, who somehow consider Group 3 “less PDA” even if some members of Group 3 have more difficulties with the same issues because they’re compounded by being aspie.

This is, in a way, “baked” into the definition of PDA, where some symptoms are literally the absence of autistic symptoms. Like, “focused on people rather than objects” appears on several PDA diagnostic checklists. This isn’t a “symptom”, in that completely neurotypical people tend to be focused more on other people than objects, it’s a “default”.

Making an analogy to the subject of this blog, it’s like if autistic people with Lyme were considered “less Lyme-y” than people with just Lyme, because “having Lyme” were defined as “having a tick-borne disease from a spirochete but tending to have normal social skills”. There’s really no reason for the “tending to have normal social skills” (even if most infected with the spirochete DO) other than to create an artificial boundary.

In practice, as I’ve said in the first post of this blog, most people in the Lyme community do in fact not have autism, and most autistic people don’t show signs of Lyme, which can lead one to experience feeling left out in either community when having both. However, I haven’t experienced Lyme patients being actively critical of those among them who also have an ASD the way I have seen among PDAers. Yet at the same time, while there IS a group that thinks Lyme causes autism, I haven’t seen people with Lyme as a whole insist they are on the spectrum.

In the PDA community, I have seen it stated that aspies are hard to understand, hard to get along with, too intellectually arrogant, sometimes creepy, etc. Yet at the same time they insist they (the PDAers themselves) are “as much a part of the autism spectrum” as Asperger syndrome. In other words, they do much of the same “othering” as neurotypicals due to aspies, while also considering themselves closer to autistic than neurotypical.

I have in no way been convinced by this experience that the PDA-like traits that some of us aspies experience are any less real, or that we can’t work on them just the way “genuine” PDAers would, but rather that PDA groups are not where we need to be going for validation on this.