CF and it's Effects on Mental Health - Part 2

*Please be aware that this piece contains mentions of anxiety, depression, OCD and death so if you are triggered by any of these of then please take care when reading*

*Also, please know that everyone experiences mental health differently; there’s no right or wrong way, please never deem yourself as ‘irrelevant’ or ‘not serious enough’ or believe you’re ‘unworthy of help’ just because you don’t seem to comply with any ‘norms’ that might have been wrongly established. Never be afraid or ashamed or embarrassed to reach out*

Samaritans - 116 123 (free 24-hour helpline)

Text Shout – 852 58 (crisis text line)

SANEline on 0300 304 7000 (4.30pm–10.30pm every day)

Once again, I've cut a lot out of these pieces in an attempt to keep them appealing enough to continue reading, so as per my last post, please be kind to others, as much as you think you know or understand somebody's situation, the likelihood is that you don't know every detail so try to avoid judgement and comment, we're all trying our best. So, to continue with my MH posts, this one regards OCD and guilt, the latter might be a bit sensitive so just be mindful if you think this might affect you ❤️

Obsessive Compulsive Disorder

What is OCD?

Obsessive Compulsive Disorder is not simply about being tidy or liking pencils to be organised in colour order or having the TV volume ending with a certain number, just because you like it that way. It is so much more demanding than this.

‘Mind’ defines Obsessions as ‘unwelcome thoughts, images, urges, worries or doubts that repeatedly appear in your mind’. And Compulsions as ‘repetitive activities that you do to reduce the anxiety caused by the obsession. It could be something like repeatedly checking a door is locked, repeating a specific phrase in your head or checking how your body feels.’

My Experience

As I've previously said, I've noticed my anxiety becoming more ‘advanced’ regarding the ‘if I worry about it, it won’t happen but if I don’t worry about, it will happen’. I’ve had brief discussions with my lecturers (I’m studying Psychology ironically) and friends who are very aware of their own mental health issues, and there are suggestions that it’s starting to stray into OCD territory. Please note that I’m not self-diagnosing but through researching it further, I can identify characteristics of OCD in my behaviour.

One of my friends described her OCD in an excellent way, referencing a ‘little angel and devil’ on her shoulder which is her ‘rational head’ and her ‘obsessive head’. Now, I am extremely irrational person, so, my ‘obsessive head’ could simply be described as a very scatty Hulk. Due to its strength, it beats my ‘rational head’ to the ground; it’s tiny, extremely weak and easily beaten, and if it tries to speak up when I’m getting anxious, my ‘obsessive head’ literally RKOs it, puts it in a headlock and muzzles its mouth begging and screaming that if it says something rational, the irrational thing will occur and I will get hurt. Now you may think ‘why don’t you just try thinking the rational thought?’ well my friend, for me, it is mentally impossible to do this, there’s a mechanism in my brain that blocks the slightest possibility of letting myself even entertain the thought, I can’t do it because to me it is a very real threat that something bad will happen.

Always having this mindset is utterly exhausting, it affects every single aspect of my life: health wise (occasionally, I'll have to walk into the hospital almost hoping that something bad is going to happen just to ensure that it doesn't 😶), education-wise, friendships, relationships and when it's tied in with the anxiety, it makes it even worse. I do have to appreciate the fact, that 99% of the time, what I expect to go wrong does not but despite this, I still haven't mastered the skill of breaking the cycle.

I currently only have one ‘routine’ (and I hope it’ll always just be the one) that I have to carry out but in all honesty, I don't want to divulge into this as it does make me feel very vulnerable.

Guilt

Guilt seems to be a particularly common emotion among those with chronic conditions. For myself, it's guilt for family having to take so much time out for appointments and admissions, looking after me if I’m ill and having to deal with my outbursts of emotion. Friends for visiting me in hospital, particularly flatmates and partners at the time for experiencing it first-hand and putting up with it despite not even getting a choice in the matter (but doing an excellent job at not batting an eyelid or passing any kind of judgement). Guilt for having to take so much time off work, particularly when working in care. Guilt for being out of lectures and not being able to contribute as much as I’d like on group projects. Even occasionally, the team that provide my care, that is their JOB but I still feel a twinge of guilt when contacting them, I suppose because I feel like I’m taking up too much of their time and they’ve got people who are more seriously ill than me to worry about (even though they tell me I must contact them if something's off).

A particularly unique sense of this is survivors’ guilt. In this case, it’s seeing other people with the same condition but them being far more unwell than I and having to experience more pain and illness. A large majority of the time, I find myself questioning why I am able to go about my normal life most of the time and they can’t. Why did they die before their twenties, why wasn’t it me?

The most extreme time I felt this was last years’ summer when I had gotten particularly poorly and stayed in hospital for just over two weeks. A nine-year-old girl with CF had just received a double lung transplant after two years on the waiting list. The surgery had all gone well, a couple of bumps here and there but she was discharged, managed to start school again and was thriving, a completely new life for this remarkable girl who deserved so much after everything she’d ever been through. But she developed Sepsis and passed away very soon after. She had only reached 10 years old. She had been fighting to breathe for 10 years, continuously in and out of hospital, more than the most experienced patients would ever dream, particularly as it was throughout her childhood. I had not cried so hard for so long in years, all I could think was why her? Why so young? Why couldn’t that have been me? Why am I the one that’s being discharged tomorrow when she’s just died? I should've taken her place. She had so much more to experience and prove to the world.

I don't think any counselling or therapy (in my case anyway) can really help you accept events like this and the thoughts that come along with it, because at the end of the day, we suffer with the same condition, the same biology, so there's not really a straightforward reason as to why it couldn't have been me. It just provides that little bit more encouragement to do your very very best for all the people that haven't made it this far, to do it for them.

Thank you to those that have managed to reached the end (again haha). I hope despite the subject, I'm managing to keep the tone up? My final piece will be up on Friday evening, as I said previously, this is a heavy one discussing the concept of 'Natural Selection' but I hope to see you there anyway! Have a lovely the rest of whatever time of day you're reading this :)