I thought today’s post will be a little different, our blog is about how DID impacts on all areas of our life. Friends are important and Tim has been one of the strongest friends in the systems life.
Tim has been one of the most consistent people in the systems life. He has always supported us to achieve our dreams even when he doesn’t agree with my madcap ideas. He is a skilled artist, a great musician and just a good guy all round.
Tim accepts all members of the system and treats each of them appropriate to their level of understanding, age and needs. He is also my carer and helps with basic life tasks, takes me to appointments and has supported me through the hardest period of my life.
How did you meet Katrina and The System? Katrina came into the Art Gallery where I was working. She was pretty quiet and downturn. She was struggling with suicidal thoughts.
How did you find out about the DID? I think you told me.
How did you feel when you found out about our DID? Just took it in my stride. I wasn’t shocked or aghast.
Who was the first Insider you met? James. (I think)
Was it obvious who had presented? After a while, yes.
Who is your favourite Insider? I like most of the alters but if I had to pick, I would choose Jade because Jade is no trouble and fun.
Does it ever get frustrating when we switch? No.
What are the recognisable signs of a switch you have noticed? You clean your glasses a lot, you also rub your hands on your jeans and the body goes blank and you become none responsive until the switch has finished.
Was you aware of DID before we told you about it? Interesting question, I would probably say no.
What would you like to tell other supporters of systems? Try to look at all the alters as different people with their own set of needs and requirements.
What has been the most frustrating aspect of supporting the system?
Two things. First, the sudden way that the system can change from happiness to misery usually at the flick of a switch. I know that you can’t help it at the moment but, it’s hard especially if we have had a good day together. Second, the unwillingness of people not wanting to understand.
This weeks blog post is a link up with The Money Freak. The Money Freak talks about following Dave Ramsey’s 7 baby steps in the UK. The Money Freak also offers excellent advice regarding budgeting. Well worth a read.
Having mental health problems don’t just impact on the mental and physical. It can have a significant impact on work and income.
I have been out of work for the best part of a decade. It isn’t how I saw my life. As a teenager growing up, I vowed I wouldn’t spend my life on benefits. I had it all planned out. I would be a teacher, happily married and would have two kids. I would be comfortable and not feel as powerless as I did. I often look back at my teenage years and realise how naïve I was.
School
At school I was a hard worker, I excelled at English, Drama and Science. I liked Maths but, despised my teacher. I even I think won a student of the year award. Unfortunately, when I was 15 all my hard work has crumbled. Someone mugged me coming home from school and ripped a laptop bag off my shoulder. Two grown men against a tiny teenage girl. The police investigated but, nothing was every done. I think it was the trigger my mind had been waiting for.
My mental health broke down under all the pressure I was under trying to live with the repeated abuse and the surrounding secrets. The gaps of time I had grown used to over the years grew longer and my grades suffered. The internal voices became louder and my fear increased. I was also experiencing depersonalisation and derealisation. I didn’t feel real and everything else didn’t feel real.
Friends reported that I was being rude, aggressive and was acting different. They couldn’t keep up with my mood swings and the school expelled me when Dream hurt a pupil.
The school let me come back when I had to do my GCSE’s. I scraped by with 2 Cs, a handful of Ds and shamefully a U. That ended my dreams of being a teacher.
Employment and benefits
Over the years I have had several attempts at employment but, usually ends with me being fired and confused. Employers have fired me for things I can’t remember doing, saying I am too inconsistent or I have missed shifts. After a few years of bouncing from one job to another I had to throw in the towel and claim disability benefits. Which thankfully I have never had trouble with accessing but, I know how lucky I am.
I have had my fair share of assessments and I lived with constant fear it will be stripped away from me. I feel sometimes I don’t deserve it and am ashamed that I claim benefits.
Why is it expensive?
I have not only got mental health problems; I also have a complex heart condition called tetralogy of Fallots (Tetralogy of Fallot is a group of four structural abnormalities within the heart that occur together.) and in 2016 I was also diagnosed with a chromosome deletion. I have had several significant surgeries since I was a baby.
For me being disabled has meant lots of appointments, medication and lots of car parking fees. I live in a rural area which means I have to travel a decent distance to get to these appointments. Getting a bus just isn’t an option when you need to be at the hospital 25 miles away by 9am. My carer Tim is fantastic at taking me to these appointments, his £62 a week carers allowance doesn’t always go far enough though. Especially as most trips to the hospital take a full day.
Tim also helps me when I have been admitted to hospital late at night and been discharged at 2 am after one of the insiders have attempted self harm or suicide. Tim also takes me to almost all of my therapy appointments.
Therapy as well has been an additional expense. Whilst I am lucky to live in the UK with our free health care the mental health services is lacking. I had to turn to private therapy as I wasn’t getting the right help on the NHS. The NHS is a wonderful service but, seems ill equipped to help DID patients. However, £40 a week for the long-term future is well worth the investment if it means becoming well.
Me and Tim on the way to an appointment
Tim says:
Often Kat is great at giving me petrol money and paying car parking fees. The carers allowance barely covers my living expenses and I cannot work because of my health issues.
How does DID affect budgeting?
I have found budgeting difficult over the years until recently I was impulsive and couldn’t keep track of my spending. When I had the girls, I became better at making sure I met their needs. Over the years I have had a time where I can’t remember what I have spent the money on, I have also found things I don’t remember buying.
I have also ended up with significant debts because of struggles with managing debts. However, I discovered this very bossy man on YouTube. Dave Ramsey spoke about using the envelope system and James has implemented it into our finances. Hopefully, it will allow us to manage our money a lot easier.
My life isn’t set in stone and hopefully as I recover I can achieve those long-forgotten dreams and I will be comfortable physically, mentally and financially.
I am tired. No reason actually but, have this overwhelming feeling of being so tired. I feel like internally I am being pulled in 18 different directions and I can’t seem to keep anyone inside happy, nevermind myself.
Small basic tasks feel like I am climbing a mountain, I am also dealing with the fact I believe yet another Insider has emerged. Monday night I had some “revolving door switching”, there doesn’t seem to be room to breathe as each part burst out and did what they wanted to do, it wasn’t until I went to bed after giving the night up as a bad job did I notice the writing on my arm.
The writing was repetitive and written in sets of threes; I know if I listen inside long enough I can hear a voice in my head as well who would repeat the same words repeatedly. However, I have started to listening to music as loud as I can at home to stay safe as the words set my anxiety on edge.
Our usual sources of entertainment are not holding our attention long enough to hold our interest. All I want to do is curl up on the couch with Pepper and sleep.
James discusses the way a large subset of therapists and mental health professionals continue to stigmatise patients with DID.
We seem to have the worst luck with therapists and mental health professionals.
We will never forgot the therapist that burst into tears and cried for the entire session when Katrina touched lightly on the trauma we had experienced or the psychiatrist that recently informed us that there was no difference between DID and BPD. (Borderline Personality Disorder) Which was so incorrect we spent the entire day shaking our head in disbelief. (DID and BPD are on the same spectrum but, they are on opposite ends.)
However, this comes nowhere close to the therapists, psychiatrist and mental health professionals who refused to engage with us. The care coordinator who would end the session if Katrina got triggered, and an Insider presented. Someone once informed us they would only talk to the real person. We have read about other’s systems where the therapist would stay silent and not talk if an alter came forward.
Treatment like this is not effective, it only causes further invalidation. It makes Insiders feel unwelcome. Survivors of abuse need to trust the person they are working with and by saying only one system member is welcome will not establish trust.
You may need to ask to speak with a certain personality. It is best if you do this directly and ask if that alter can come out. Sometimes the answer will be “no”, and you should accept that. (Amongst Ourselves)
For us, all it did do is reinforce Jack’s mantra that Professionals let us down. During the 18 months we worked with the care coordinator we didn’t make much improvement because, of this constant invalidation.
In the UK DID doesn’t seem as much recognised as our American counterparts. Many professionals seem to not even know what it is and they shrug it off as attention seeking. What they understand seems misinformed or contradictory. The psychiatrist who told Katrina firmly that people with don’t know who the alters are and so she can’t have DID.
However, there are services that educate therapists, which allow these therapists to learn the tools to work with dissociative survivors. In the UK, PODS (Positive Outcomes for Dissociative Survivors) led by Carolyn Springs offers courses mainly for therapists.
The answer to this disconnection is not to disconnect further by refusing to talk to anyone other than the main person (called by some the ‘host’). The answer is engaging all the parts, and starting to help them make connections with each other, by becoming aware of one another and working cooperatively together.
In August 2018 Katrina finally reached her limit. The therapy they had offered her via the NHS would not even establish even a single layer of what we needed. I then gave my agreement, and we started the search for a therapist that would work with us. After searching a short while on the BCAP we found our current therapist.
We are her first patient with DID and we are learning together. Our path hasn’t been smooth, we had a bump in the road early on when her supervisor felt unable to support her or us as it was out of her depth. Luckily our therapist found a supervisor who specialised in DID.
Our therapist has made it clear early on that every Insider was welcome to speak. Nobody has to but, all is welcome. So far I believe only myself, Katrina and one of the Littles have spoken to her. I am sure as time passes most of us will have our voices heard.
Therapists need to examine what they hope to gain by encouraging systems with DID to repress themselves. All they are doing is silencing the voices that have already experienced suppression.
I can understand maybe they feel out of their depth or that they don’t believe in the diagnosis at all. That is fine but, please don’t continue to work with a Dissociative Survivor, encourage them to find someone else. However, for many people especially in the UK this isn’t always an option. We can only pay for private therapy as we claim PIP and to get a private DID diagnosis can cost up to £1800. More needs to be done to help people with DID.
All system members should be welcome and All system members’ voices should have their voice heard.
I blinked, and the street swam into focus. Cars flew past on the busy road. I felt light-headed and pain throbbed behind my left eye. I realised I was carrying a bag of food. Looking inside it someone filled it with chocolate, biscuits and sweets. There wasn’t anything nutritional or sensible.
“Well, that rules out James,” I pulled my phone out of my pocket and saw that an hour had disappeared in a blink of an eye. Judging by the contents of the bag and the fact someone filled it with sickly treats it could only be on system member. My happy Little.
Looking around, I realised that I wasn’t far from home and headed in that direction. I cursed silently under my breath. I wish she wouldn’t spend my money; I wish she wouldn’t switch and go shopping.
One of the littles shopping adventures!
Over the years I have learnt to identify when Insiders have come out. Whether it’s finding sweet packets on the floor, or being dressed differently. The taste of tea lingering in my mouth or finding myself away from home. I have made a list of things myself and others have noticed.
Before a switch:
I grow light-headed.
I feel younger or older.
A headache forms behind my left eye.
My mind grows blank and I struggle to string a sentence together.
I grow more quiet.
After a switch:
Some of my Insiders are very messy.
I will find things I don’t remember buying.
Time will have passed in the blink of an eye.
If James comes out, he will often change into something he feels more comfortable in. (makes me look like I am going into a job interview)
My friends have noticed:
A friend who also lives with DID reported before a switch my breathing changes. (We game together) and my voice sounds more distressed.
My best friend explained that my energy changes.
Some Insiders have made it easy to tell but, others have learnt to cover their tracks. I suspect there is one Insider getting up at night but, at the moment none of them will own up. Hopefully, as we progress in therapy we will learn to manage the symptoms.
I hosted a poll on my Facebook page between two topics “The good parts about living with DID” or “System Meetings.” System meetings won but, I want to write today about the good parts as sometimes I need a reminder.
It is very easy to get bogged down in the struggles of the system, each member is dealing with their own personal issues. We are still dealing with the loss of the girls and so occasionally our system is chaotic and difficult but, this doesn’t detract from the positives.
By developing DID as a child I managed to escape the inescapable. The ability to dissociate is an incredibly creative ability to escape. Yes there is a sadness at least for me that someone had to take my place but, by doing so I managed to survive.
There is always someone able to take over if I cant or dont want to face a task. When we work together as a team we are like a well oiled machine. Like the machine each cog is important. James is good at doing the budgeting and cleaning, Carole excels at making hearty (fattening) meals. There is always someone willing to go to work or therapy. There is also always someone willing to face the unpleasant tasks.
We get to watch kid movies without feeling to old. We have 15 members in our system, the ages vary from 4-60. We often feel drawn to watching family films such as Matilda. We dont feel to old because we are not sometimes.
We are never alone. From the minute we wake up until we hit the pillow at night there is a constant stream of banter. Yes it can be frustrating but occasionally can be hilarious.
There is many more positives but these are just a small example. Its not always doom and gloom.
Our Collective Life 