Following on from my post in July that focused on my response to the trending hashtag #ThingsIShouldHaveSaid, I got thinking more about my life. There are things I wish I didn’t have to say, and have never felt able to say, but things that I wish people knew so that they understood better, could have more empathy, and could realise just what a toll it takes being this ill for this long. So here’s my list of #ThingsIWishYouKnew, feel free to add your own in the comments, I’m always interested to hear what’s going on in other people’s heads whether it be related to a condition or not.
I feel like a failure, almost all of the time.
I’m scared I won’t get better.
I’m desperate to make a difference and I’m worried I won’t.
I don’t know what to say or what to talk about anymore, I don’t feel I have anything to add.
I second-guess myself all the time.
I’m sorry if my constant apologising is annoying but I genuinely am sorry if I’m at all difficult to be around.
I worry all the time that people are just tolerating me because they feel bad for me.
I don’t know who I am anymore.
Sometimes I wonder if this is all I’ll ever be.
I don’t know who I want to be.
I no longer recognise the person in the mirror.
I don’t feel like the person in the photos.
I don’t recognise my thoughts anymore.
I dissociate regularly and often have very poor memory or concentration because of this.
I miss you.
I miss me.
I have trichotillomania – when I’m really stressed I pull out my hair. I’m so embarrassed by it and by how I look and I hate that it’s so obvious to everyone but I can’t help it. Almost no one mentions it now but I know people must be wondering why I have huge gaps in my eyebrows and eyelashes and I wonder if I’ll ever look “normal” again.
Periodically I get tempted to try medication again because I’m just so desperate to find a solution and I keep hoping that maybe this time it’ll be different and it’ll help.
I can’t tolerate change. I say I can, I try my best, but almost every change I have to deal with is extremely difficult to handle and often causes me significant anxiety.
I feel guilty all the time. About being a burden, being boring, being irritating, letting you down, and so much more. I feel guilty about all of it and spend hours trying to work out how to make it up to people.
I never feel good enough.
I hold myself to impossibly high standards.
If I spend too long thinking I panic and become overwhelmed so I constantly have to keep busy, often doing multiple tasks at once in order to drown out my thoughts.
My anxiety is starting to show on my face. I spend so long stressing and worrying that I end up frowning or stiffening up my face and now I’ve got lines across my forehead and above my nose which are becoming permanent even though I’m only 25.
I’m scared I’ll never fully recover.
I often wish I didn’t exist.
I often wish I could disappear and leave no memory of me so that my family and friends could get on with their lives and not worry about me or have to look after me anymore.
I struggle with basic tasks and feel extremely embarrassed about it because I simply don’t have the capacity to plan things properly anymore.
I’m scared of getting better and the pressure I’ll be put under to improve quickly and go back to work.
I’m scared I’ll relapse.
I’m scared I’ll put everyone through this again and that maybe next time people will be less understanding.
I question myself constantly.
I’m always looking for the reasons why I got ill and trying to work out how to get over those things so I can get better and stay well.
I spend huge amounts of time wondering why people don’t contact me, what made them stop being a close friend and what I did wrong.
I often wish I could just be invisible.
I often feel invisible.
I feel like I have to prove myself all the time
I’m sick of fearing everything and wish I could just be laid back and not care.
I spend hours most nights lying in bed unable to sleep and go to bed later than I should just to avoid this as much as possible, I even go through regular phases of dreading bedtime because of how anxious I get at night and I have to listen to audio books just to stop myself having panic attacks too often.
The longer I’ve been ill for the more I feel like I’ve lost myself. For months I managed to stay being chatty and feeling like I had something to offer and now I’m often quiet because I don’t know what to say anymore and social anxiety just paralyses me because I feel boring or stupid.
I want to talk but I don’t know what to say.
I don’t know how to talk about being ill anymore.
I feel so overtaken by my condition now that I no longer see a line where it stops and I start, everything seems to be tainted by the anxiety and it feels like it’s killing me from the inside out.
I wish people would ask instead of guessing or assuming.
I wish people would just ask.
I desperately want my life back and to feel confident and capable again.