Tag Archives: Trauma

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

A Very Validating Experience

As I write this, I deal with a nasty cold that I’ve been feeling come on for a few days but wasn’t willing to accept was coming on. Not that there’s anything I can do about it. Whenever one of us has a cold, my husband always searches the Internet to find out whether they’ve found a cure yet. So far, no luck. I’m not terribly sick as of yet anyway. I think my husband suffers almost more from the weird noises my body makes when I can barely breathe than I do.

A lot has been on my mind lately. I could of course write a gratitude list and devote a sentence or two to each thing. I may do that eventually, but right now, I want to share about a specific experience in more detail.

Last week, we told our staff at day activities about ourselves. We disclosed that we may have dissociative identity disorder (calling it multiple personality) and explained that it’s a trauma-based survival mechanism. The staff member we told was totally fine with it. She actually validated us, saying she’d seen a little come out to her.

Then on Monday this week, we had a flashback while at day activities. A fellow client needs to be given oxygen at times. This reminded one of our littles of the time we needed oxygen as a four-year-old because our trachea had closed up. An adult alter was able to explain this to a staff before the little came out, but then we could no longer keep ourselves from switching and the little popped out.

This little started talking to our staff, the one we’d come out to the week before. She asked to sit on the staff’s lap. We had agreed when we first came out as multiple that this is okay with both the staff and us. It was such a nurturing experience.

Afterwards, an adult did feel the need to check with this staff that it’d been alright with her, but it had been no problem. That’s a good thing about doing day activities at a center for intellectually disabled people. I’m pretty sure that in psychiatric care, we’d not be allowed to express such a “childish” need for affection.

A Letter to the Insiders

I want to write, but I don’t know where this is going. In fact, until I wrote down the title of this blog post just minutes ago, I had no idea I was even going to write a letter to my alters. I was inspired to do it by the recovery-based letters some people write to their mental health conditions.

Another thing that inspired me subconsciously, was a conversation with a dear friend on the need to integrate as part of treatment for dissociative identity disorder. This is often seen as the only possible end goal, and this dear friend was even told so on her first appointment with a therapist. We feel very strongly about this. First of all, integration is the third and last phase of treatment for DID, so it feels very wrong to discuss it at the very start. Second, integration can also mean living a functional life (ie. integration into society). I know many therapists, including I think our psychiatrists, feel a merger of all alters as somehow more healthy than living as a functional multiple. Well, agree to disagree.

The first phase of treatment is stabilization. This includes getting to know your system, learning to deal with feelings, developing inner communication, etc. After this, the second phase is trauma processing. Only once all traumas have been processed can you begin to integrate.

We don’t do DID treatment and aren’t likely to get it ever at all. After all, the diagnosis process scares the crap out of us and we’re unlikely to be believed. As such, it’s all the more important that we validate ourselves.

Dear you,

Welcome. We appreciate you. We are glad that you’re here, for you helped us survive. Without you, we wouldn’t be where we’re now. Thanks for that!

We know you may feel sad, or angry, or confused. that’s all okay. It may not feel okay to you, but that too is okay. Your feelings are valid. They’re there for a reason.

We want you to know there are people out there to support you. Inside, you have an entire system of alters that will help you be the best you you can be. If we work together – and that includes you -, we’ll heal.

Outside of the body, you’ll meet our support staff. Maybe you’ll be able to meet our mental health team too. Most of the people in our current life are supportive. We know this hasn’t always been the case and that’s one reason you’re here. We are here to help you heal from those experiences. You can trust us.

You may not be able to disclose your true identity as an alter to everyone, but there are people in the DID community you can talk to as yourself.

We hope this letter helped you feel a little bit safe. It’s still scary, but things will get better.

Love,

Us

Psychiatrist’s Appointment Next Week

Next week, we’ll meet with our psychiatrist to discuss how to proceed in our mental health care. Whether we want to continue at all, and if so, how. We’re very nervous and still haven’t made a definite decision yet.

Our nurse practitioner is still off sick. Until a few days ago, I thought that we didn’t need any mental health care, so we were more or less okay with him having been off for over a month already. I felt that getting assessed for trauma-related conditions, as our psychiatrist had originally wanted, was just stressing us for no reason. Most likely, we wouldn’t be believed so just end up where we’re now, with a BPD diagnosis and required to do DBT. I guess we’d rather keep the status quo than be told we definitely don’t have trauma-related issues.

Then we thought, so what if we keep on merely surviving like we do now? If we don’t get therapy, will our mental health ever get any better? Besides, our psychiatrist had been talking discharge, even though she called it a break. So what if we end up in crisis?

Some of us were also feeling like our psychiatrist wants to get rid of us. Like we’re a pain in her neck. Lots of pain has been coming up and today, we nearly landed in crisis because of it. We called the mental health team, even though we’ve been feeling like we shouldn’t need them. Our former assigned nurse called us back. Thankfully, we had a good talk with her.

She said that not doing DBT or trauma therapy doesn’t mean we’d be discharged altogether. We could also just have an occasional supportive check-in with a nurse. That’s not what our psychiatrist said, but oh well. It also doesn’t mean we’ll never get therapy again, or something. Maybe we could take a break for half a year and see whether we want the assessment an dpossibly therapy then.

A lot of us are feeling all sorts of things. We feel attachment pain, which scares the crap out of some of us and makes some of us feel shameful. After all, our overreliance on mental health was the exact reason we got kicked out of the mental institution last year.

It doesn’t help that our support coordinator has also been off sick for over a week. I hope it’s just the flu. She’s supposed to go to the appt with us next week, but if she’s still sick, of course she won’t come. We did discuss our concerns with our staff at day activities yesterday and they offered to write our questions down for us.

As a side note, we had a very validating experience at day activities. When discussing our issues with mental health care, we mentioned DID (calling it multiple personality). Our staff said she’d seen us switch to a little girl. Wow. I didn’t know anyone could tell unless we use our own names.

Phone Appt With Our Psychiatrist

Like I said last week, we’d have a phone check-in with our psychiatrist on Tuesday. We called the team’s secretary fifteen minutes after the psychiatrist was due to call us. Normally we wouldn’t be so impatient, but we were at day activities and didn’t have our phone with us all the time. The secretary put us through to the psychiatrist.

The phone appt was better than some of us had expected. That was mostly due to the fact that the psychiatrist didn’t berate us for trying to get into supported housing. She didn’t comment on it at all, which confuses us a little.

The psychiatrist talked about her proposal in early October to get us on the waiting list for a trauma/dissociation assessment. This had given us a lot of stress. Some of us want it, because they feel it’ll enable us to get trauma-informed therapy. Most of us are scared though. Some of us don’t even believe we’re dissociative. Some of us do, but don’t think anyone will believe us. In short, most of us would only want the assessment if we knew it’d validate us. That’s unlikely though.

The psychiatrist also talked about our E-mail to our nurse practitioner. We had written to him that we’re unsure whether we want to continue with our DBT skills training, because we fear we’ll need to make ourselves look better than we are. I’m not even sure what whoever wrote that E-mail meant by it, but I know change is scary.

The psychiatrist now proposed to give us a “break” from treatment. This’d mean our GP would handle our medications and we’d basically be discharged from the mental health team. We could still get some sessions with our nurse practitioner to help us create a good crisis prevention plan for our support staff.

Many of us have all sorts of mixed feelings about this. Some feel relief, while others feel fear. Some cling to the wish for a trauma-informed therapist. Particularly the littles wish to be validated. I don’t know though whether that needs to be by a trauma therapist. They have so far felt most validated by our intellectual disability agency staff, after all.

Mother As Source

I was finally able to read The Emotionally Absent Mother again, since transferring it from my computer to my iPhone. Until I did this, I was unable to read any of my EPUB eBooks, because the program I used for it was no longer supported by my screen reader. I missed reading this book in particular, since it had a lot of eye-opening questions in it. I last wrote about it last August, when I shared about good enough mother messages. Now, I am moving on in the book and starting with the roles good enough mothers have. The first one is mother as source.

This section starts with the assertion that mother is what we’re made of. It goes on to assert that, both literally and on a more spiritual level, we come from mother. Literally, we come out of her womb. Spiritually, nature is often seen as coming from the ocean, which is in mythology seen as a mother goddess.

This whole assertion seems a bit off to me. Like I said in my post last August, I was raised primarily by my father as a child. Obviously, I came from my mother’s womb, but this is hard to imagine.

One of the thought-provoking questions in this section is to imagine yourself in your mother’s womb. If you can’t imagine this, you are encouraged to imagine being engulfed by her energy. This gave me uneasy feelings. I have never felt able to see that I come from my mother. In fact, my parents used to joke that the neonatologist brought me into the world, not my mother.

Good enough mother-sources are able to create a positive and welcoming environment for their children with their presence. They make the child feel proud to be of her. As such, the next question in the book is whether you wanted to be similar to your mother or as different as possible (or anything in between). If someone were to say you’re so like your mother, would you be proud?

I have to clarify here that my mother herself didn’t and still doesn’t have the healthiest self-esteem. She used to say, and it came across only half jokingly, that I inherited all my bad characteristics from her and all the good ones from my father. As untrue as this is, I didn’t grow up feeling proud to be like my mother, because she didn’t convey that she had any characteristics to be proud of.

With respect to my father, who primarily raised me, I wanted to be like him as much as possible. Until I was an adolescent, I saw my father as the ultimate embodiment of success and every other positive quality. Then I started realizing that he too has his flaws. I now feel more closely related to my mother than to him.

The next question is whether you can imagine being proud to be of your mother. Do you identify yourself in relation to her? My short answer to this is “No”. I identify myself more in relation to my mother-in-law than my own mother.

In short, I do not feel my mother was able to be a good enough source. Of course, physically she wasn’t, by no fault of her own. By this I mean that all her pregnancies were complicated and the one with me ended in my premature birth. I don’t want to say that somehow she rejected me, because I know she didn’t. Once I was born, in fact, I was more unconditionally – or should I say less conditionally? – welcomed by her than by my father.

Of course, the stress of having had four pregnancy losses prior to being pregnant with me, could’ve caused her body to be less welcoming to a fetus. That, however, and I want to be very clear about this, isn’t her fault, or anyone’s fault. There is nothing my mother did to cause my premature birth!

Mental Health Ramble

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.

Seven Things I Wish My Unsupportive Parents Understood About Me

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.

Preverbal Trauma

Today, I wrote in a Facebook group about preverbal trauma. I know for a fact that I endured a lot that could have caused PTSD from birth on. I was born prematurely, spent the first three months of my life in hospital and was hospitalized several more times before the age of five.

About seven or eight years ago, I started experiencing body memories that I immediately associated with a medical emergency that I endured at age four. At the time, my trachea closed up and I as a result had difficulty breathing. I never completely repressed that memory, always knew that it’s something that actually did happen.

So I wonder if I made said association because it makes more sense than connecting the body memory to preverbal trauma. I mean, preverbal trauma is very controversial, because people do not form that clear memories until the age of three. That doesn’t mean people cannot be affected by preverbal trauma. It just means the memory is hard to recover.

I have alters. About six years ago, an alter emerged that is constantly curled up in a fetal position. We don’t know more about her. A seven-year-old alter who also emerged around that same time talks about that alter as a baby in the incubator. Now of course babies in incubators are not in the fetal position, so yeah.

Still, it all makes me wonder whether I’m making all this trauma stuff up. I mean, yes, I was born prematurely. Yes, I spent three months in hospital and had repeated re-admissions before the age of five. But my parents say that until age seven, I was completely fine and carefree. I mean, it’s not like everyone who endured trauma develops PTSD. So could it be I’m just making this whole preverbal trauma thing up?

In a preemie parent support group, I asked whether anyone has experience with their child getting EMDR for medical trauma. I have always wondered whether EMDR could help me. It was recommended when I had just been diagnosed with dissociative identity disorder in 2010. Then I heard it’s not recommended unless you’re very stable otherwise. Well, the consultant I talked with on Monday said that’s no longer the case. So maybe I could benefit from it. Several parents responded about reading their child a “life story” about their birth and hospital stay while the psychologist did the EMDR. Since my parents aren’t very supportive, I cannot ask them to help me with this, but I could create my own life story based on what my alers tell me.

Consultation Meeting at Day Activities

So I had a meeting with the Center for Consultation and Expertise consultant at day activities this morning. First, I talked some with her alone. We discussed my care needs in some more depth than we’d done when she’d visited me and my husband at our home. I still feel the ideal situation is that my husband and I could still live togehter but close by a care facility. I also mentioned that, though my husband supports me wherever I go, he has some reservations about us living in a lean-on apartment together. A lean-on apartment is where you still live independently, but close by a care facility. Since my husband and I together make too much money for renting a home too, and we don’t have a huge financial reserve, choices are limited. This means most likely I’ll either have to manage with the same amount of care I get now, but we could move to a larger town, or I’ll need to go the long-term care route and essentially live away from my husband during the week. I can manage okay’ish now and I don’t want to risk my marriage for better care, so I’ve already reluctantly set my mind on the former.

We also discussed my needs for mental health treatment. We discussed the insiders and I named a few. The consultant, herself an educational psychologist, took my experience surprisingly seriously. I had expected she wouldn’t, given how she seemed to respond when my husband said he’s married to Astrid, “pieces” or not. I mentioned having come out to my psychiatrist. I’ll have a meeting with her and my nurse practitioner on October 2. I mentioned the psychiatrist having said that my treatment may take another five years. Again surprisingly, the consultant didn’t react negatively to that, saying instead that if I felt it’d be beneficial in the end, I should go for it. We also went into childhood trauma a bit, which is the reason the insiders are here. The consultant recommended I discuss getting EMDR with my psychiatrist and nurse practitioner. I said this had been recommended by the psychologist who rediagnosed me with autism in 2017 and on whose report my treatment plan is based. However, that psychologist recommended I do dialectical behavior therapy first. The consultant disagreed, saying that nowadays, people who aren’t very stable or even people with intellectual disabilities can benefit from modified EMDR. She mentioned a therapist’s name that I couldn’t fully understand and a quick Google search came up with nothing.

Then, we drank coffee and after that, the consultant talked with my day activities staff. She asked what activities I do during the day. She also recommended my staff respond proactively to my becoming overloaded. I’m not so sure I like that, but I think it’s for my own good anyway. I mean, we again went on a long walk this morning and I couldn’t fully keep up. As a result, at the end the staff decided not to take me on the full, hour-long walk again for now. I so badly want to meet my goal of 10,000 steps a day, so I feel pretty awful having to cut back.

On October 4, the consultant will make her recommendations at a meeting with my home support coordinator, assigned day activities staff and me. I’m hoping for the best.