Tag Archives: diagnosis

Chaotic Cancer: A Family Member’s View: Telling People

Please be aware that some of the content may be triggering. Please take care ๐Ÿ’š.

Part of the whole cancer diagnosis and prognosis is the telling people all about it. It’s surprising some of the reactions that you get and the responses you feel as well. Some of the things that I’m going to write about are things that my mum has felt about telling people as well.

When it came to telling people about mum’s diagnosis, it was really hard. I didn’t want to cry on people. This meant I didn’t ring people with regard to the diagnosis. I rang one person when I told them about prognosis. I think with the diagnosis I blamed myself so much. I’d stopped self harming as part of the therapy I’d been having but for me, my thoughts made me feel I had to harm to stop people getting ill. Then mum got cancer. How could it not be my fault? I knew people would know I was evil.

Telling my best friend was the first person. She was amazing and the first thing she said before I’d even mentioned the above thoughts was “it’s not your fault”. She knows me very well and it was hard to see it. My belief in that statement wavers a lot still. My best friend has been an amazing support and checks in with me regularly. She’s not afraid to talk to me.

The reason I mentioned my best friend isn’t afraid to talk to me is that some people do seem to react after telling them by avoiding you or not asking the “how are you?” or “how is your mum?” questions. And I do understand this. Some people can’t deal with this. I get it. But that doesn’t mean its easy to deal with. Both me and mum struggled with this. Mum said she felt like she had something ccontagious that people needed to avoid. I felt the feeling of abandonment. The whole BPD abandonment. And it added to the whole “people know it’s my fault and hate me” thoughts. This was so hard to deal with and still is.

Another reaction is people tell you of their experiences as either a family member or a person who has had cancer. This can be useful but it can be scary too. It’s not something I’d want to change though.

Overall telling people is an exhausting experience. And sometimes even working out what order to tell people in is an issue too as you don’t know who will tell others before you get there. I thought it would be easier telling people about cancer than about my mental illnesses as its not so taboo but I’ve found that not to be the case at all. People are still scared to discuss cancer.

If you have any tips or thoughts on telling people, feel free to share in the comments or on Twitter, Facebook or Instagram.

Chaotic Cancer: A Family Member’s View: Diagnosis

Please be aware that some of the content may be triggering. Please take care ๐Ÿ’š

I introduced this series of posts in this blog post โžก๏ธ Chaotic Cancer: A Family Memberโ€™s View: Intro. This post is about my mum’s diagnosis of cancer and some information and thoughts surrounding that.

My mum’s cancer was an incidental finding. We had no suspicions that she may have cancer. There were no obvious signs (though looking back we have picked some out). It was far off the radar. I don’t know if this made it easier or harder to deal with. I have no prior experience of anyone I know getting cancer. But it was tough.

Mum went into hospital before Christmas with an inflamed gallbladder. She had antibiotics and came home. About six weeks later at the beginning of February 2021 she had a reoccurrence of the inflamed gallbladder and so they decided to remove it in an emergency surgery. It was then that they found something. On her liver were lesions. Tumours. They took biopsies. Then we had to wait for the confirmation of cancer. They knew it was. It couldn’t be anything else. But we didn’t. So I grasped that tiny bit of hope. Hung on to it tight.

Within a week she was back for the results. It was, surprise, surprise, cancer. A rare one. Slow growing. Treatable. Neuroendocrine cancer. That’s what they told us then. There was still hope. But I dissolved. That day I sobbed for an hour. Mum was meant to be isolating after exposure to covid while on the ward but screw that, I hugged her. Then the guilt set in.

To understand this guilt means explaining that in my therapy I’d been working to stop self harming. I had been using as an OCD type compulsion to stop people getting ill. I’d been told it had no effect on them not getting ill. Then this happened. I’d made my mum get cancer. I even told my dad it was my fault. The guilt overtook me. I had ended the therapy by then ahead of a new group but all I wanted was to email the psychologist and tell her she’d made me give my mum cancer. Yup, totally irrational. Or that’s what I’m told. I bounce back and forwards still.

With the diagnosis came a lot of emotions. Emotions I didn’t understand. Emotions that were set to overwhelm me along with other people’s. So I pushed mine down. From the day after the diagnosis I didn’t cry for a long while. I threw myself into the practical. I didn’t feel anything. I totally blotted out my feelings. I had enough to overwhelm me with other people’s emotions. Those had a name though as people could tell me them. My own I can’t name.

So diagnosis was stage one of the whole cancer chaos. The start of the chaotic world it brings. And beginning it all in the midst of a pandemic has brought challenges as well. Mum was on her own for the diagnosis as at our hospital appointments have to be attended alone. I think that has hurt her a lot. I don’t know though.

So from diagnosis comes many more tests and appointments. These I will discuss in another blog post. I think I thought diagnosis would be the hardest part. How wrong I’ve been.

If you want to share any experiences, thoughts or resources feel free to use the comments or my Twitter, Facebook or Instagram accounts linked to this blog.

Being Invalidated

Please be aware that some of the content may be triggering. Please take care ๐Ÿ’š

“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 2021: Session 3

Date of session: 19/01/2021

Please be aware that some of the content may be triggering. Please take care ๐Ÿ’š

Since my last session I have felt incredibly unwell mentally. My anxiety has been through the roof, especially with regard to the homework she set, and I’ve had many flashbacks. I’ve not slept particularly well and felt very sick. This is where we started the session.

My homework had been to wish for my psychologist to get ill everyday. This made me feel particularly ill. It was to prove to me that I have no control over people getting ill. And I understand that and rationally know its true but I’m not there on an emotional level yet. The psychologist had not been ill, or at least she told me she hadn’t, and tried to reassure me. It had also brought up ideas that maybe this had been to prove how evil I am as well. The psychologist started to think maybe this had been a step too far too soon. We may go back to this at a later date.

The main point of today’s session was to create a safe place for me to go to mentally in my mind. This didn’t go particularly well and I think the psychologist saw this. I do feel I should have been guided better with my choice as its far from appropriate now I look back at it and at the end of the session it was suggested I might try somewhere else that is calmer. I feel because I was being asked to use emotions to find the safe place I misread it all. I find emotions so hard to place. I was totally lost with it.

I’m trying so hard in these sessions. I’m continuing not to self harm. I know it’s going to be more difficult before it gets better but at the moment I’m struggling. I feel so alone. I feel noone can understand this. Feeling constantly on the edge of panic is exhausting. I’m so tired right now.

Therapy 2021: Session 2

Date of session: 12/01/2021

Please be aware that some of the content may be triggering. Please take care ๐Ÿ’š

This session was an incredibly difficult one. I still feel very unwell from the session even after over 24 hours after the session. Many things were covered.

We started the session by looking at how I am doing with not self harming. At the time of the session I was on day twenty eight since I’d last sef harmed. I explained it was still causing me extreme anxiety that people will become ill. I explained I’m trying to keep going over the rational side of things but it is hard, especially before sleep. We talked again about the rational side and things I can do to make my bedtime easier. She then set me the hardest thing I could think of doing at this time. She wanted me to wish for her to become ill each day.

As soon as she said this to me I felt physically sick. The thought of saying that I want anyone to become ill is just so against what I think and feel and do. I’m still finding it hard to comprehend and my first day of trying it has left me feeling even more physically unwell. I understand the point is to show me I don’t have the power to make people ill but I’m still scared.

We also looked back aty results from the Dissociative Experience Scale (DES) that I completed in the last session. It came out pretty high at 85% out of 100% which says I’m dissociating a lot of the time in different ways. We looked at specific questions I scored highly in more detail so she could get a bit of a more in depth understanding about my dissociation. Problem with this though is that when you dissociate quite often not aware of things so it was tricky.

We also completed the IESR questionnaire which looks at the effect of trauma on my life. This consisted of twenty two questions related to how much certain things, linked to trauma, effected me in the last week. I scored fifty three which is apparently quite high and suggests PTSD (Post Traumatic Stress Disorder) which is stressing me to the point it impacts on my immune system. So it’s nice to know I score highly somewhere… ๐Ÿ˜• Above thirty seven identifies PTSD. Apparently it was not surprising I scored highly. It was a difficult questionnaire to do.

All the things I’m doing now are working towards starting proper trauma therapy. I’m feeling really apprehensive about it all at the moment. Life is feeling extremely difficult and I’m working on finding new ways to cope. We shall see how things go.

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 2

Date of session: 09/09/2020

Please be aware that some of the content may be triggering.

Today was session 2 of this round of therapy. And my goodness was it hard. The build up was very much part of the difficulty. I found last week extremely difficult and was scared what may come this week.

This week though the psychologist wanted to discuss whether I should even do therapy. She was unsure if it was the right time which confused me a bit as I had my assessment which was then discussed with others who agreed on therapy and this was done by someone I knew so could talk to more openly. I felt like I was going to lose the therapy before it even started and I could feel the panic in me rising. While doing therapy is hard the thought of not getting it just made me feel totally hopeless.

The psychologist decided we should do a pros and cons list for doing therapy and not doing therapy. They were as follows:

Pros of doing therapy:

  • Reduce flashbacks
  • More aware of causes of issues
  • Reduce self harm
  • Improve things

Cons of doing therapy:

  • Relapse may occur
  • Feel like a failure if I don’t achieve anything
  • Painful to do

Pros of not doing therapy:

  • Don’t have to deal with things
  • Don’t have to change

Cons of not doing therapy:

  • Lose hope

I then had to score how important each were and it came out that I really wanted to be doing therapy and trying. This is true. That con of not doing therapy was for me the biggest thing. Losing hope. If I don’t do therapy I don’t know what will happen. I feel stuck if I don’t as everyone is convinced in order to sort anything out it is what I need.

So it was decided I should do therapy but maybe not trauma based. This is disappointing in some ways as it’s what I feel is holding me back but as I’m self harming and hearing a voice she is not convinced I’m stable enough. The thing is the psychiatrist is convinced I need to do this therapy in order for these things to be help. So yeah… Where do we go to from here? I feel trapped.

I started to feel like I was dissociating during this session. I think it was self protective as I just wanted to cry but not in front of someone I barely know. I cried after.

So that was session 2. I think I’ve got a lot to process still. I’m feeling very vulnerable. Also a lot of pressure to stay stable. I’m not very good at that at the best of times. Thing is I feel BPD doesn’t help with stability. Who knows what will happen next?

Will I Recover?

“Will I recover?” is often the first question you think when you get ill. You wonder whether things will ever be the same again. You wonder what the future holds. This is the same whether it is a physical or mental illness, but it seems less clear cut when the illness is mental (though I know many physical illnesses carry the same ambiguity).

I have a mental illness for a long time. In fact in my head I don’t ever remember feeling OK mentally. This has meant recovery to me has always felt unclear. The major thing with the question “will I recover?” is defining recovery. This is tricky in mental illness, maybe more so than physical illness, where the lines aren’t always obvious.

Recovery for everyone is defined differently. For me the definition below is what I feel I aspire to most.

My reason for identifying with this most of all is that it is not about going to a state where my mental illness is completely gone to be “better”. My recovery will be about managing my condition.

However… I have still gone through the “Will I recover?” question looking for the answer that says my illness will be completely gone. I think that’s what a lot of people want. It doesn’t seem fair that managing a condition is all we can hope for. It’s not like the broken leg that is often used in the analogy of getting treatment for a physical illness versus a mental illness. It is not clear cut. It takes a lot to feel well with a mental illness.

This is still a complicated idea as recovery is still what is aimed for in some mental illnesses like depression where complete recovery is possible in some cases. I’ve even been told that those of us with Borderline Personality Disorder (BPD) may be classed as recovered as we won’t meet the criteria for a diagnosis with time and treatment. However for many of us it will be about management more than being completely better so for us this is our recovery.

So back to our main question “will I recover?”. There is no simple answer. Will we ever be how we were before our illness? Probably not as it changes us and that’s not necessarily a bad thing. Will we be able to live a decent life? Yes. It won’t be easy but there is hope. Its not easy to see in the midst of mental illness. I struggle with this most days and even as I write this it’s something I’m struggling to believe but I’ve seen others manage so that’s my hope. Hope for recovery, in whatever form, is what we need to keep. We may just have to adjust our thoughts on what recovery is for us.

I’d love to hear your ideas on this topic. Feel free to share in the comments or on Twitter, Facebook or Instagram.

Picture from Pinterest

N.B. Since writing this post I have come to dislike the word recovery with a passion. I’ve decided it is not the word for me and I don’t wish to use it in relation to dealing with my mental illnesses. I know this is a personal choice and I respect other people’s choice to use the word recovery.

Kindness At A Higher Level

We live in a society that is often far from kind. I’m not talking about individuals, I’m talking about policy and societal norms. Being individually kind is important but we need kindness as a society to make a larger change.

Unfortunately we live in a world led my money rather than kindness and what is best for people. I can understand this. Money is finite and so we have to spend with care and this can mean cuts that are the opposite of kindness. We see this in mental health services all the time. People are turned away as not sick enough or not enough resources. People are sent miles from home when unwell and needing the kindness of family close by. There are some changes that really need to be made and cutting more and more is doing the opposite of kindness and therefore worsening mental health issues at times.

Also as a society we are far from kind to those who attempt to end their life. Many are labelled attention seeking and selfish. Many a person has been heard on a train that has hit a person berating them for ending their life and delaying people. The kindness that this person needed appears to of been absent in their life and their death. Instead of asking what could of been done to help them before this event they are condemned for seeing no other way out.

Society is also cruel in its use of social media. While social media can be great there are the trolls and the nasties who are far from kind. They band together to bring cruelty to one person. They push people over the edge as they can’t show kindness. They condemn people as guilty before hearing the full story. They forgot that a little kindness could improve the world and keep people alive.

By changing our outlook from the top down we could prevent so many deaths. By acting as a society we could improve life for many. It’s time to unite to be kind as well as individual acts of kindness.

I’d love to hear your views so feel free to share in the comments or on Twitter, Facebook or Instagram.

Self Harm: A Decision?

Please be aware this post will be discussing self harm so some content may be triggering.

There is a lot of thought about whether self harm is a decision or not. I know it’s a highly controversial topic and it’s something I’ve been thinking about for a while. As someone who self harms it can be a difficult thing to consider.

The definition of self harm is deliberately hurting yourself. This suggests that self harm is a choice but how much is that true? When we consider self harm as a symptom of a mental illness is it really a choice?

If you had an illness like cancer would you consider your symptoms your choice? Quite obviously the answer would be no. So is self harm any different? If you ask anyone with self harm about what happens when they need to harm most will say its an uncontrollable urge. It is something they feel forced to do. This is especially common as you go deeper down the self harm hole.

The urge to self harm, for many, is intense. It takes over. It’s hard to think clearly. The urge is made stronger by the fact that many who self harm have low self esteem and don’t feel deserving of care. Whatever has been a trigger will bring up all sorts of feelings that are hard to deal with. Everything can feel overwhelming. Sometimes we are not totally there, maybe dissociated. Then it’s not really a choice is it?

But in some ways it can be a choice. We decide to inflict the harm, don’t we? I honestly don’t know. This is where I’m hugely torn. And why I’m torn is based on how I see others and how I see myself. For others, and this is probably the most important part, I don’t think it is a true choice. There is a lot leading or pushing you in that direction. It is a symptom of an illness so is never a true choice. Then I look at myself and berate myself for choosing to hurt myself in the first place.

I don’t give myself a break on the decision making idea. I blame myself for self harming every time. I blame myself for making that “choice”. I see myself as truly being the reason I’m hurting myself. Even the name makes it seem like that. Especially when medical staff call it deliberate self harm.

And this is where the issue becomes more apparent. We are treated by medical staff, including in mental health teams, who see it as a choice rather than a symptom. Yes I may pick up the blade etc but there is something pushing me to that. I am unwell. My choices are not truly my own always. It’s not an excuse but an explanation. I’ve been told I’ve made the choice to hurt myself. This in a time when I was so distressed I couldn’t see any other choice. So surely it isn’t a true choice?

There is hope with this though and this is where it gets more into the dodgy area of being a choice. Learning through therapy of other ways to cope instead of self harming means we do start to have a choice between self harm or using our new coping methods. I start to see why they say its a choice. They’ve given us other options and we’ve gone for self harm. What they don’t seem to realise is we probably chose their new methods first but it takes time for them to be an effective choice for us. It’s all about time.

So these are just my views on self harm as a choice, I’d love to hear yours. Feel free to connect in the comments or on Twitter, Facebook or Instagram.

Picture from Pinterest