DID and...Part Two

Hey, it’s me, Alex again, and if you read the first super boring part by Mila, that is awesome.

She really thought you should know a little about the actual diagnosis and some of the symptoms we have that we did not know were weird. I am here to tell you how they are weird and how it shows up in ways in our life. I promise I will be WAY more interesting. I may also edit a little of Mila’s stuff because she can be so just blah.

Sensory Issues

Let’s start with a fun one that affects our daily lives in multiple ways. We have SO SO SO many sensory issues. Not all of us have the same ones, but sometimes they are so intense that the whole system just has a complete meltdown. One of the big ones for us is too much activity in a space. We struggle with things like concerts, amusement parks, crowded public markets, and things like that. If we know ahead of time that we will experience something, we can usually prepare and be okay, but not always. We are very tired after and often nap or go into total meltdown like a toddler coming off sugar. This can be disconcerting for people around us who do not understand. The sensory issues do not stop there, though.

Let’s talk about clothes. OMG, we love hoodies and jeans. Jeans feel protective, so we wear them every day; even when we actually went to church, we wore jeans. We know sometimes we should dress differently, but we haven’t been able to do that yet. As far as hoodies, we like them oversized so we can feel the weight of them and hide in them. We have one that is our favorite (it replaced one we had had for like 10 years), and it is two sizes too big, a men’s hoodie, and hangs down to our knees, but it is warm and cozy and hides us away in safety. When we can’t wear hoodies, we tend to wear tank tops, usually soft to the touch and without tags. Tags are a tool of the devil (only mostly kidding). We have a couple of nicer tops, but we have to prepare ourselves to wear those, too. The hardest part is that no one in our community has the same style, so on top of sensory issues, we fight over which of our limited wardrobes to choose from. We want to care about what we look like, but we struggle because we also want to be comfortable and safe. Oh, and we never look at ourselves in the mirror.

Still in the clothing area… let’s talk about socks. We love cozy socks, but they must not fall down, and the seams have to be in the right place, or we cannot wear them. This is a symptom of autism, we are told, but even when we were little, we would cry hysterically when our socks were ‘wrong’. The way things feel extends to towels, washcloths, rugs, and bedding. Bedding is huge. We love our weighted blanket; it makes everything calm down inside. We have a shake plate that does something similar. We can’t handle certain feelings like silk when we sleep.

Food Issues

Granted, our food issues tie into sensory issues, but they are a whole other category, so let’s move to food. As far as sensory stuff, we are weird about food. Some of this is trauma-based. We had things happen to our food that were simply disgusting, but that will be a different, more private blog. Any food that feels like it has hair or once had hair, like coconut, kiwis, and even peaches, is off limits. No clue why, but they are. We even like the flavor, but cannot handle knowing there was hair at some point. Most fruit with strings, if we cannot pick them off, so bananas are ok, but oranges and grapefruit are a no. Again, sometimes we can force ourselves to eat it, but not often. Fruit and veggies must also not be too slimy, too crunchy, too anything, or it's a no. We are trying more diverse foods, but it is still a challenge and not one we can accept every day. This can be a pain when you are on a specific food plan. We do have food addiction and other food issues on top of that. (We will write about some of that later). What this means is we eat certain amounts of certain types of foods that are weighed and measured. We do not eat flour and sugar in any form. Some people think this is restrictive, and in some ways it is, but it is also helpful to know the rules. Our menu is restrictive in some ways because of our sensory issues, but overall, we have a wide range of options.

We have another odd food issue that is partially DID and trauma, and partially autism and toddlerhood. We have several Littles inside. These are parts that are under 10; most are 5 and under. They are great to be around (so we are told), and while they are wise beyond their years, they are still kids. They get pissed at having to eat vegetables and not having cookies or not having an ice cream cone when they did not freak out at the doctor. Some days, certain foods set them off, and more than once, a meal has been thrown across the room, plate and all, in a fit. Our Littles love green beans and chicken. They are content to eat it every day. If we eat something they don’t like, they often make us sick, but again, different post. So now you know, we eat a very limited palette for a whole host of reasons.

Order

Possibly the most annoying of our issues is the need for order, schedules, and lists that we can never find or follow. We obviously grew up with some pretty intense rules. Those rules constantly changed, and if we did not change with them, we were punished. We have tried living without rules for a couple of months now, and it has not gone well. We are freaking the fuck out. So, we asked our person for some rules, and then we panicked because we cannot do them perfectly, and we are so worried she will leave and we will get punished. We are struggling to regulate in a way we have never experienced. We feel like we will end up losing our person because of this, and we are doing our best to prepare. We moved to be near her, so if this happens, I guess we will end up having to move again.

We have a daily schedule and we try to follow it, but if something runs over or someone comes out unexpectedly, we can lose hours and have no clue what happened. If plans have to change suddenly, the whole system goes into chaos. We do not handle change well, especially without notice. This is likely an autistic trait, but it drives us crazy because we do not know why we get so upset either. We keep things in specific places, not always places that make sense, but the system needs them there. When someone moves something, we panic. Unfortunately, this does not just happen in our home. We get flustered and unfocused when someone at a meeting chooses a new seat, when a window is open that is not normally open, or the room changes. We notice when people smell different, wear different shoes, or even have a new scratch on their body. We don’t mean to notice such things; we are just hypervigilant. Our amazing DID consultant, who is also a therapist, just not for us, meets us on Zoom. Sometimes she is in a new room or has moved a container, or a new picture is hanging up, and we always comment. We can tell if she is co-fronting or switches momentarily. She has better control than we do, but sometimes we get glimpses. If you ever want to know what it is like to be a multiple and a professional that is actually fully functional, check out her podcast “A Couple of Multiples”. Sometimes we get on her nerves, but we have learned to trust her and rely on her. We hopefully get to meet her in person next year.

Now, let’s talk about lists. We make lists all the time, and then we lose the lists. We also lose keys, glasses, shoes, and pretty often, our car. It is insane to drive to the grocery store and come out as someone else, not knowing where you parked. I’ll spend an entire blog just telling you about the weird shit that happens.

Addictions

I won’t go much into addictions, not because they do not deserve exploring, but because they deserve more than a mention at the bottom of a long post. We are pros at addiction, and when one is under control, others tend to pop up. They are coping mechanisms that often hide DID from the outside world. As it turns out, there are probably lots of addicts who have dissociative disorders, but they do not realize the problem until the addiction is dealt with, so no one talks about it.

So much love if you have read this far. It is nice to share a bit about our lives and not know if you think we are total liars or exaggerating or if you hate us. Writing is a form of therapy for us, and it gives our person a break. I look forward to writing more later. If there is anything specific you want to know about or have questions, just ask. We want to be a mostly open book and educate the world while we also heal.