Tag Archives: what not to say

Chaotic Cancer: A Family Member’s View: Tests

Please be aware that some of the content may be triggering. Please take care 💚

I explained this new little series in an earlier post ➡️ Chaotic Cancer: A Family Member’s View: Intro

So with diagnosis you think the next step is treatment but oh no there is an endless round of tests and appointments to deal with. And it’s stressful for all involved.

A lot of these appointments and tests happen at the last minute so it is extremely hard to plan things around them. Things get changed at the last minute and the term chaotic is very apt.

For someone who needs routine and control this has been extremely hard for me to deal with. It’s not easy for anyone but this has added to the stressfulness of the situation. I can feel the anxiety in me about a change in routine. It’s selfish I know. Or that’s what I’m telling myself. What’s my anxiety to my mum’s cancer?

Having a lack of control over the situation and life in general leads me back to my reliable coping mechanisms. Not good ones. Self harm is back. And honestly I have no shame about it. I know I need better ways to cope. But currently don’t have the time.

For anyone going through this, how did you cope with the appointments? My phone calendar has never looked so full and I think that is the only thing giving me any sense of control, having all the dates in there.

Feel free to share your thoughts, tips or ideas in the comments or on Twitter, Facebook or Instagram.

Being Invalidated

Please be aware that some of the content may be triggering. Please take care 💚

“To invalidate means to cancel something or make it void, as if it never happened. In invalidate you see the word valid which means true or correct. When you invalidate something you are making it less true, less official, or less correct.” (vocabulary.com, March 2021).

The meaning above can be applied to things you experience. It can be caused by other people and events. It can make you question your thoughts, feelings, emotions, experiences and reactions. It can make you feel awful. And people sometimes don’t even realise they are doing this to you.

When you tell someone that what they feel isn’t justified or to just stop feeling that way, then you are invalidating the way they feel. You are telling them what they are feeling is not true and not correct. Yes, you may not have felt that way in that situation but everyone is different and that doesn’t mean that what that person is feeling is invalid.

It’s important we think before we speak. It’s what might feel like silly things that can have an effect on other people and cause them to feel invalidated and it can start when we are children. What we are saying may to us sound reassuring but it ccam invalidate the child. Saying to a child who is nervous about an exam that they shouldn’t be is invalidating. Instead saying you understand why they feel that way but you feel like they are well prepared so it should go well is acknowledging their feelings as valid while reassuring at the same time.

Some mental health professionals could also do with understanding the power of invalidation. Telling someone that what they are experiencing is minimal or not that bad can have lasting effects on everyone and especially those with a mental illness. It can cause them to deteriorate further. On my write ups from the psychiatrist appointments it would often say my self harm was superficial and it would make me try to cause myself more harm as I felt they weren’t taking me seriously. I’ve also heard of people with eating disorders who are told they are not thin enough being made sicker.

I know that although having a diagnosis can be a burden I felt it a validation for what I was/am experiencing. It made me feel that someone could see that something was wrong and I needed help. However this means professionals need to be careful about removing diagnoses from patients as it can add to invalidation. You are taking away the validation you gave them. There needs to be a conversation and careful explanation.

It is possible also to invalidate yourself as well. This is harder to stop doing, I know I do it a lot. It’s important for us to try and allow ourselves to experience our feelings and acknowledge them. This is easier said than done though.

So when speaking to anyone try to consider their feelings and not cancelling them out. We all need to think of how our words and actions impact on others.

Therapy 2020: Session 16

Date of session: 16/12/2020

Please be aware that some of the content may be triggering. Please take care 💚

Today was my last session of 2020. It was also meant to be the last session of this course of therapy but that has changed and will be now continuing in the new year.

Yet again the anticipation of the session was overwhelming. In all honesty I’ve just felt incredibly tired since last week and no idea what else I have felt. I’ve not really had the time to investigate what I’ve been feeling either.

Today we looked again at the stopping of self harm. To do this we looked again at the motives behind it and how I feel when I try to stop. The huge anxiety it gives me. This made her more sure this was now an OCD behaviour. We looked at intrusive and obsessional thoughts and how they relate to my thought patterns. I did get a little frustrated that I wasn’t being understood.

Because of looking at this as an OCD behaviour it has meant we are going to look at a certain way of combating this. I think it was called habituation and changing the way I see it from a need to a want. We looked at what is classed as a need and what is classed as a want. It did leave me feeling guilty about my self harm. There will also involve a behaviour experiment about what might happen if I don’t act on the thoughts.

Part of the habituation means giving up the self harm and riding out the urge and the anxiety it causes. This feels scary and my anxiety started to creep up just talking about this. It was edging on panic. The thought of losing the self harm is scary. I’m terrified. I have to log everything about how I feel, what I think, what I do to distract/help myself and how long the anxiety lasts. Apparently anxiety shouldn’t last more than 40 minutes. This is not my experience but we shall see.

This time of year is hards for me. Part of me wants to say this isn’t the right time to stop but is it just another excuse? I’m dreading later on when I don’t do it. Will I just be a failure either way?

I have two weeks to see how I go. Two weeks until another session. I hope not to be a burden to others. I’m hoping I don’t compensate with other behaviours I use to ease anxiety. We shall see.

Therapy 2020: Session 14

Date of session: 02/12/2020

Please be aware that some of the content may be triggering. Please take care 💚

Getting round to writing about this session has taken a while. The session left me in a highly emotional state and it took time to get that under control before I could even begin to process the session. There will be holes in this as some personal things were discussed that I’m not ready to share.

The start of the session was taken up with starting to think about what will happen after my time is up as I’m only meant to have another two sessions. There was a discussion of trauma based therapy and EMDR but this won’t happen unless I stop self harming completely. This has left me with some choices to make and things to consider. In the session I felt myself becoming very defensive around this conversation. It’s something I need to work through before next week.

We did the usual scale of how I am and I just couldn’t think how I was. It’s been a tricky week but it’s not been the worst. But I don’t feel great. It’s all very confusing to me. I really don’t feel I have a handle on this at all.

We then went back to the formulation we’ve been working on to look at my core beliefs and whether things have changed. And when looking at them and working through it, they have to an extent. Instead of using evil to describe myself it’s gone to bad but I also added in that I’m a burden. My core beliefs when related to other people have also changed though this was harder to look at. It really showed black and white thinking in my world which is hard for me to acknowledge most of the time.

This therapy has definitely made me see that a BPD diagnosis does fit but it has also made me start to question whether something else is not quite right too. This again is something I need to look into.

We seemed to make progress in this session and where I had written out some things after the session last week, I shared some of this. That was never my intention but I found it helped me explain things so she understood it better. She seemed to find this useful too.

I’m finding my issues with language surrounding events is still there and it makes me extremely uncomfortable to hear certain words. I know I shouldn’t be scared of words but I am. This is part of the reason I became highly emotional at the end. The session did seem to end suddenly though and I don’t feel that helped. But it could also be that I started to dissociate.

Overall it was one of the better sessions in that I feel progress was made, even though I’ve felt awful ever since. A technology glitch may also of helped in that the video link wouldn’t work so it was all on the phone and I couldn’t see her. Let’s see where next week takes us.

Therapy 2020: Session 11

Date of session: 11/11/2020

Please be aware that some of the content may be triggering. Please take care 💚

I’m not sure where to begin with today’s session except its left me in a very bleak place. And if I’m honest I didn’t start in a very good place either. My mood has been extremely low. This isn’t just the ups and downs of life, this is sinking depression. I know the signs. I’ve lived with it long enough to know when I’m going into a full on depressive episode.

We started by looking at the task set for me last week of finding three good moments each day. I explained I’d found this extremely difficult and had only managed at most one a day. I said it was probably due to my mood being so low. She asked if anything had triggered the low mood and honestly nothing has that I can think of. Therefore the old addage of just be positive was put on the table. This is where she started to lose me for the session.

She decided we needed to do an exercise to find the positives. Fair enough I thought. She had me list what I could remember doing yesterday. She asked how I’d felt about those things. I said I hadn’t felt any enjoyment in them and they just felt like hardwork at the moment. I was being honest. I got asked if I thought everything had to be enjoyable and easy. Of course not. I live in the real world and know that life does not work that way. What I was getting across was that I’m struggling to look for the good and can’t find the energy. Maybe I wasn’t clear enough.

We went through each thing I’d done. She said I’d been productive. I knew this. It didn’t make it feel good to me. She kept reminding me I was privileged because:

  • I have a dog I can walk
  • My mum paid for the shopping I did for her, even though I bought nothing for myself
  • That my parents allow me to live with them as, I quote, “lots of people wouldn’t want a 31 year old adult living with them anymore”
  • I ate a cheese sandwich that I didn’t particularly enjoy

Now I’m aware I’m very lucky. I have always held my hands up to that. And I’ve never suggested that it is any other way, but using these to find the good in my day just felt really off to me. I felt awful. I felt a burden. I even wrote on my paper that “I am shit and a burden”. So finding the good had made me see I am an awful human being.

She then said that she wasn’t gaslighting me. Just wanted me to see the good. I found this hard as she had made me feel like what I was feeling wasn’t valid. That I wasn’t allowed to feel negative. Maybe I read it all wrong. I’m not saying that isn’t a possibility.

I still have to keep a log of the good in my day for the next week. At the moment I want to shove it where the sun don’t shine and not do it. I know how my mind works and I’m not sure if I’ll feel better or make me feel worse about myself. Who knows?

We discussed that I’m in physical pain at the moment. I have carpal tunnel syndrome in both hands. She explained she didn’t know about that but as I tried to keep my hands warm to make it easier for myself, maybe wearing another pair of gloves would take the pain away. I don’t know why this statement bothered me so much or maybe it was the way it was said. Or maybe it is me just being sensitive.

My lack of eye contact was also mentioned briefly. I’m not sure why. She scribbled it down when I said I find it hard a lot of the time. We’ll see what, if anything, comes of that.

There was no telephone call as she rapidly brought the session to an end as she needed to head off. The session is normally at least 50 minutes. We finished at just over 40. Again brain is using this to punish me. I realise I’m being selfish and thinking I’m worth more. Apologies. I’ll get over it.

Lockdown 2.0

Here in England we are heading into our second lockdown across the country. While the first was not great, I’m finding the thought of this second one much harder to cope with. I’m sure I’m not the only one.

For the first lockdown I had lots of projects I set myself. I had a routine that suited me well. I even enjoyed my lockdown birthday. This time I feel so empty about it. The idea of finding projects to do feels overwhelming. This time I’m not in charge of my routine. This time I can’t keep everyone safe as those that I live with who were shielding no longer need to this time.

The thing is I’d been hoping for a second lockdown as I didn’t feel safe in the world as it was becoming. People were hugely selfish and disregarding the rules. In shops it was like people thought their mask made them invincible. I’m convinced many had stopped washing their hands. And noone could count to six.

So now the second lockdown is here I’m anxious. I’m living with someone who is terrified of being trapped in the house again and who’s mental health has suffered a lot. This has impacted on my own mental health detrimentally. I feel trapped with them. I feel I’m not strong enough to support them through it all again. The first time took its toll as it was.

It also doesn’t help that my own mental health is probably in a poor state anyway. I’m going through therapy and it’s hard. I’m cut off still from those I just want to hug. And have been for months. I’ve seen so many people deteriorate over this time period that I’m worried what it will do to them further. But I don’t feel strong enough to support them and feel guilty about this.

Overall I’m full of anxiety and doing my best to stick my head in the sand. I don’t want to read the news or the endless speculations. I don’t want to see the selfish people who are hoarding already or hear the complaints about what is being done to save lives. It’s overwhelming me with feelings I can’t identify but make me feel sick.

This lockdown is necessary. But it’s scary. I wish I could say we’re all in this together but some have shown us otherwise. I’d like to say I’m here for you all but that would be stretching myself too far. All I can say is there are numbers in the crisis contacts part of the blog (look in the menu). If you feel bad, talk. You are not alone. Big hugs to you all. Be kind 💚

Therapy 2020: Session 9

Date of session: 28/10/2020

Please be aware that some of the content may be triggering. Please take care 💚

Going into today’s session I was not feeling great. I was in fact dreading it and for the last few days I was considering whether to just cancel it. However I didn’t and so the session went ahead.

When asked how I felt I explained I didn’t know how to explain how I felt and wasn’t even sure I knew myself. We then went through it step by step to try and identify the emotions. This seemed to take the whole session.

Disecting the emotions was something I found difficult to do and to deal with. Emotions to me are so alien in terms of what they are called. To me they are just either good or bad. And disecting them actually made me feel worse. For some reason it made them feel more overwhelming.

My issues with emotions have long been there. I feel stupid that I can’t name them. I just find it frustrating.

I’m finding therapy is making me realise how much I’m actually struggling. I am finding issues I didn’t know were there and it’s demoralising. It’s like I’m never going to be able to function as a normal human being. This happens each time I do therapy. I see things I thought I was managing broken down and show I’m not doing as well as I thought.

I also forgot to do the activity mentioned to me last week which I totally forgot about. This didn’t go down well. There were also some other things that made me want to tell her that I know about mental illness and other things. There are times I feel I’m being talked to like I’m an idiot and have no idea about certain things. This is probably my fault. I struggle to talk. I struggle to find words.

I’m not sure where we are going to go with this next week. I was grateful for cat cuddles and being wrapped in a blanket during this session. I’m still finding the whole distance thing hard otherwise. Dreading next week already.

Why I Hate The Term “Mental Resilliance”

“Mental resilliance” is a phrase that keeps cropping up. But it is a phrase I have come to hate with a passion, especially with the way it is being used. It’s connotations make me uncomfortable and I cannot accept it.

First of all I think we need a definition of the word resilience. I’ve found a definition of it in psychology:
“The ability to adapt well to adversity, trauma, tragedy, threats, and even significant sources of stress.” Better Help, 2019

This doesn’t sound too bad. It suggests that we can learn how to get over issues more quickly. However this has led to people taking the phrase and believing that people with a mental illness should be more able to get over a mental illness quicker if they are resilient or even not suffer in the first place. This has been shown by comments made by prominent people in the media.

The problem with these comments is that they imply that if you get ill mentally you are not resilient enough. It gives a sense of failure and that you are not a strong person. This couldn’t be further from the truth. Quite often people with mental illnesses are strong and resilient for too long. They don’t seek help straight away as they feel they should be able to deal with it. This talk of resilience reinforces it.

So what should we be doing?

I’m not saying there is no place for teaching skills to help with mental resilience as it is useful to deal with stressful situations in the short term. However we need to make the narrative clear that mental resilience is not a concrete prevention against mental illness. It is still possible to become unwell even if you are resilient. It does not mean you are weak if you become unwell. Mental illnesses are often caused by things outside our control and for that we need treatment.

Instead, as well as teaching true mental resilience, we need to be saying that it’s OK to talk about our feelings in times of distress. It does not make us a “whiny snowflake”. It is a strong thing to do and will help with our resilience in the future. We need to be helping each other. Just because your younger and suffering does not mean you are less resilient than someone older. All it shows is that I’m the past people couldn’t speak about mental illness and now they can. That is resilience but in a different way.

I think what we need to do is reclaim the term mental resilience and educate people on what it means. We need to take on these people who seek a generational divide about living with a mental illness. We need to change the language we use.

So my question today is what do you think we should be teaching in terms of mental resilience? Feel free to share in the comments or on Twitter, Facebook or Instagram.

Therapy 2020: Session 5

Date of session: 30/09/2020

Please be aware that some content may be triggering. Please take care 💚

Today’s session started off with asking me to look back on last week’s session and how I felt. I admitted I felt angry but found it hard to discuss the causes of this anger. I think for me, even though I know she is a professional and I don’t feel we get on very well, I’m still scared that she is going to stop the therapy and abandon me and I’m scared to say anything that may cause that. I’ve waited a long time for this and pinned so many hopes on it that I’m terrified of losing it and losing hope, though some of that feeling is already creeping in.

We went back over the self harm issue again and how I’m loathe to let it be the main goal of my therapy to stop it. We went through wise, reasonable and emotional mind from DBT (Dialectical Behaviour Therapy) skills to look at where I’m at. Apparently even when I think I’m being reasonable I’m not. After this we left it to go on to discuss other things, taking away from this being a large goal.

The main part of therapy today was to look at the voice I hear. I was trying to explain how even though I’m aware that it is either a chemical imbalance or trauma based phenomena it does not stop the impact it has on me. I did start to feel invalidated here, which felt ironic as later when looking at something else she stated part of my issues come from being invalidated.

Overall there is not much to discuss from today. I was very frustrated through a lot of it as I felt I wasn’t making myself understood and I couldn’t find the words to make myself understood. There are many things I struggle with and get upset with and this is a big one. It’s why many times in my actual life I don’t talk to others in case I’m misunderstood. Speaking, for me, seems to take away my ability to use language affectively. And even if I write down and read it I try to alter it and again become frustrated.

I was given my first piece of homework today as well. After I informed her I was not worth anything she decided that was not the case and wants me to find ten things that would be different I was worth something. She has no idea of the evidence I have to back up the statement that I am not worth anything.

Dear GP 2

There is an amazing account on Twitter called Dear GP where people write letters to their GP about their encounters with mental health professionals in the same way mental health professionals write letters about their patients to their GP. You can visit the website here. I thought I would have a second go at this below after an encounter during lockdown. My first attempt is here.

Dear GP

Today I had a telephone consultation with care coordinator M due to the current lockdown conditions. This was an unscheduled appointment and was preceded by a text message which stated that she wanted to talk to me straight away and was demanding of immediate contact without considering my prior commitments.

When we spoke to each other on the phone, M was in a jovial and friendly mood. She seemed to need reassurance about our working relationship due to comments from other staff members based on what she had said. She denied she had said anything to other staff members about our working relationship and stated “we work well don’t we?”. Her need for reassurance shows, I believe, an insecurity and possible fear of abandonment.

We then discussed my mental wellbeing. Here M was keen to show that everyone is struggling and dismissed suicidal ideation. Her concentration during this part of the conversation seemed to dip and she appeared to want this to end quickly.

Her next actions I believe confirm her fear of abandonment. She decided to put an end to our working together stating a too high workload. She did however say that I could always let her know good news. She seemed not to wish to cut ties completely showing difficulty with endings.

Overall I think M may need to work on her social skills but I do not wish to see her again and feel she will be fine under your care. Please do not rerefer.

Yours

Jo

Feel free to share your own experiences in the comments or on Twitter, Facebook or Instagram.