by Katie Simon Phillips
Note: This post originally appeared on Born Without Marbles and has been cross-posted with permission.
A few days ago I was out for a wander with my mother and I asked to borrow her phone because my OCD fear of contamination often means that I leave my own phone at home, meaning my “mobile” is ironically rather stationary. I did not ask to borrow her phone to play a few rounds of snake as I often did as a child (God I miss the 90’s), I borrowed it because I wanted to check my emails. You see, I am a very important person and for this reason I am often swamped with a lot of very important emails and thus it is vital for me to check my emails at all times to see what exciting opportunities I am receiving/check if my online shopping order of a new penguin onesie has been dispatched yet, because one cannot wait around all day for these things. What do they expect me to do, wear normal clothes? What a hideous idea!
Anyway, as I tapped on the little email icon on my mother’s telephonic device, I was immediately confronted with a word document in which I could clearly see my name. Had I not read my name I would have perhaps realised that this document was not for me and was actually an email sent to my mother, seeing as I was using her phone which was naturally signed into her account. Having realised this I would have, of course, closed the document and signed out in order to respect my mother’s privacy, but alas I did not realise this right away as, like I said, I had read my name. Thinking my emails had somehow popped up automatically I read on, but soon enough I realised that this message was perhaps one that had not been written for the eyes I had tucked neatly behind the rims of my spectacles (top tip: when wearing glasses always make sure your eyes are tidily kept behind the lens part of the glasses rather than allowing the eyes to wander aimlessly across one’s face).
When I realised that this document was not for me I probably should have closed it right away and swiped off to check on that penguin onesie, but alas I was all too curious and without saying a word, I read all of what was on the screen…
The document it turned out, was a draft of a letter from my parents, a letter about me. I won’t go into the full details of the letter’s contents, but as a brief summary it said “Dear High up person in Mental Health services, We are the parents of Katie who is really mentally ill and we are terrified for her life right now because things are so bad, so please can you help locate some kind of treatment that is more intense than the outpatient services she is currently receiving because she is truly insane and we do not know what to do with ourselves”. Suffice it to say, upon reading that, I was a little shocked. Obviously I know that I am mentally ill and I know that this has a large impact on the family and friends around me, but I guess that when you are the one suffering with the mental health problem, it is quite easy to forget the effect it has on other people because you are so wrapped up in your own world. Seeing this was a massive reminder and realisation as to how much people with mental health problems affect the people who love them. On this blog I am always talking about how my illness affects me and when we think about a household in which someone is a little bit on the bonkers side, it is often the person who is unwell, as opposed to the carer, who is in the forefront of our minds. This really made me think how if I, as someone who has a lot of experience in mental health problems, can forget or not realise the impact of insanity on others, a lot of people out there with no experience probably have no idea at all and therefore it needs to be talked about.
Indeed it reminds me of an incident a few weeks ago when the window cleaner rang on the doorbell to collect money for his bubbly services. Months prior, had he rang the bell, nobody would have answered because my mum would have been at work and I would have been hiding under a blanket somewhere worrying about who was ringing on the doorbell. However, recently my mum has given up work for “many reasons” she says, but if we are honest it is to care for me because, to borrow a phrase of every 5 year old trying to get out of a P.E lesson across the country, I am “not very well” (Thanks for letting me borrow that phrase kids. You may have it back now. Really appreciate it.)
Naturally though, the window cleaner is not aware of my mental health problems, so he was surprised at my mum opening the door in the day time. When she explained that she had actually given up work, he jovially commented “ahh, a lady of leisure”, and to be fair to him, how was he to think otherwise. Still it was a comment that made me a bit uncomfortable because I realised that there are probably some people out there who would hear that my mum has given up a “proper job” to look after me and would think that she is indeed a lady of leisure, swanning around the house in a floaty gown without a care in the world. She doesn’t have a mental health problem and since mine are all invisible creatures in my head, it would be easy to assume that they don’t affect her life very dramatically. This could not be further from the truth, and in my eyes my mum’s unofficial job of “looking after a maniac everyday” is not at all leisurely and, if anything, it is the most physically and emotionally exhausting job on the planet.
For me, it can take hours to eat a meal, hours to perform a washing routine “correctly”, hours to put my hair into a pony tail that is “just right” according to OCD and not likely to kick off world war three any time soon. Rituals take so long that I am frequently getting to bed around 6am, just as my dad is getting up for work, and though my mum isn’t there for all of that time, for the majority of it, she is there. She is the one calming me down after I have had a panic attack, she is the one helping me to prepare food and weigh courgettes if I am too scared to go in the kitchen myself, she is the one having to answer my constant reassurance seeking questions of “did I do that right/is something bad going to happen”. Aside from those more physically demanding things however, I would say that the biggest impact is the emotional stuff that goes alongside it.
I remember a time when I was having a particularly bad day and had found it hard to follow my meal plan so I ended up accidentally fainting (I am pretty sure it is hard to faint on purpose but I want to make it clear that the fainting had not been my intention). When I came round on the sofa I did not feel well at all and I remember mum being very anxious about it, a fact which, at the time, I felt really angry about. Looking back it sounds awfully selfish but I just couldn’t see why she was making a fuss. She wasn’t the one whose heart was skipping beats like a child with a jump rope of death, she wasn’t the one who was so weak she could barely move and whose vision was fading in and out of total darkness. If she was at all dizzy or weak, she could solve the problem easily by going into the kitchen and having a few chocolate digestives to perk her sugar levels up. I on the other hand, no matter how I felt, was still too scared to eat something. Little did I think about what it must be like to watch someone you love struggling to stay alive, without being able to do anything about it. Okay my mum “has it easy” in that she can grab a biscuit whenever she wants one, but she also has to worry about the fact that I cannot do that, that I cannot take care of myself at all right now, and that is incredibly difficult.
It isn’t even as if she can get a break very often from her role as “carer” because naturally if she isn’t caring for me she is worrying about who is doing it for her or worse, me caring for myself. She can go to bed at 2am and sleep through the rituals I carry out until 6am but I highly doubt she has a restful sleep knowing that I am awake charging around like a lunatic, worrying about whether i have eaten enough or whether I am going to have one of my panic sessions which usually leads to me doing something rash and dangerous before I have time to realise what is going on.
Living with someone with a mental health problem also restricts someone’s movement and freedom drastically, much like it might if you had a Yorkshire terrier or a golden Labrador. I have never had a dog but from what I gather, you need to constantly be aware of what they are doing and where they are going. You cannot just jet off to Paris for the weekend without worrying about where the dog is going to go, and in my mother’s situation, I am very much like that dog (only a really freaking crazy dog that you can’t just send to the local kennel.) In the letter from my parents to the fancy mental health person that I had read accidentally/kind of on purpose having discovered accidentally, they spoke about how they have a holiday booked in August and are panicking because if things remain as they are, I will not be able to be left. People know that as someone who is unwell, I often feel trapped behind the bars of the mental health cage, but it is important to realise that often, those around them are caught up in that cage behind those bars too.
Reading that letter has had a big effect on me, not in the sense that I am now “trying harder” to get better as if I wasn’t trying before, but because it has made me especially aware of how mental health problems suck both the lives out of those they inhabit and any other lives that happen to be within range. A mental health problem is not a vacuum with a specifically designed nozzle that only pulls on the sufferer, it is a vacuum with a flipping massive gaping hole that hovers over a household and jumbles up all that there is inside, so that even those who aren’t “technically ill” can feel like their world is spinning.
In a way I guess this blog is kind of like a shoutout or a thank you to my parents as well as an apology at how much I am affecting their lives negatively right now. More than that though, I want it to highlight the fact that in general, life as a carer is incredibly taxing and debilitating in its own right, and that it is a serious job, the stress of which should never be underestimated or brushed aside. Raise awareness for people who struggle of course, but it is important to also raise awareness and support for the people who are standing alongside them.
If you yourself are a carer of someone with a mental health problem, please know that on behalf of all mentally ill people, I see you, and I thank you.
Take care everyone x