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
19 thoughts on “The Effect Of Mental Health Problems On Carers”
Omg I’m really sorry to hear that. I, myself, have experienced something similiar. My mum doesn’t like her current job, she’s constantly complaining about it. One day when I was having a hard time (basically me crying my eyes out) my mum said to me that she couldn’t quit the job, because she
can’t risk not having enough money for my treatment. It broke my heart, because I don’t want her to be unhappy.
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Ugh that does sound so difficult and must be really hard to hear. I am not exactly sure where you live but wherever it is it makes me so angry that you do not have access to free health care! Luckily in the UK my treatment is free and I think it is horrible that this isn’t the case everywhere as it leaves people in such difficult situations! Still please know that as unhappy as this makes you and as rubbish as the situation is, it is NOT your fault. Yes we can put effort into fighting mental illnesses but we cannot be blamed for having acquired them in the first place. Also one thing that helped me today is that I got a lot of comments from other mothers/carers on my Facebook page. They reassured me that as hard as it is, mothers do fight for their children because they LOVE their children and WANT to help them. It just made me feel a little less guilty about the whole thing and it shows how important you are that your mum cares for you so much. Hope that helped you a little bit too and I really hope that the situation/things improve/your mum can find a job she prefers soon. You both deserve to be happy. Thank you for being so supportive and have a good evening xxxxx
Yea it sucks. I live in the Czech republic (a small country in the middle of the Europe) and there is a lot of psychiatrists who are paid by insurance but finding a psychologist/therapist who is paid by insurace is hard (and finding a good one is almost impossible). My therapist is great but my mum has to pay 500 CZK (about 15,9 GBP) for a session which is 2000CZK per month (about 63,6 GBP). For me it is a lot of money and my mum has to take care of me and my sister alone, which makes things a little bit difficult. 😦 It’s really amazing that you can get a treatment for free 🙂
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I hope one day you will also have access to all the free treatment you need. In the meantime I will be thinking of you xxxx ❤️
Wow, Katie – a very brave post to write. I’m sorry that you are still struggling so much, but I’m really glad to know that you have such supportive parents to help you along the way. Mental illnesses tend to encourage people to become insular and selfish so please don’t blame yourself for having not recognised what your parents experience when caring for you – I was exactly the same as you when my mum was selfishly (or so I thought) upset with me for hiding my dinner from her, thinking ‘well it’s ok for you, you can eat what you want and don’t experience the distress and torment that I do’ etc.
Are there any carers’ support groups that your parents could attend? They can be very helpful for carers – a chance to share experiences, offer advice and support. I’m sure this realisation was a shock for you but the important thing is that you do not feel guilty for requiring your parents’ help. They love you and want the best for you and if you can turn this into something positive by working harder to defeat your demons, then all the better. Sending love ❤ xxx
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Thank you so much for letting me feel less alone and that someone else (someone who I think is fabulous and have a lot of respect for/would never think badly of) has experienced this. It is easy to think that I am a bad person for all of this but hearing from you shows that unfortunately this is yet another negative thing that comes more from the illness rather than the sufferer (not to deny responsibility but you know what I mean). Luckily my mum does attend a carers group, my parents have joint sessions with the head of my Eating Disorder service every few months and we have started family therapy on top of all my individual appointments so they have more support than they perhaps did a few years ago. Their friends are also incredibly supportive both to them and me so I think that helps them out a bit (they take my parents out a lot for example so that they can have a break and sometimes take me to appointments). Thank you for making me feel less guilty about this and more able to turn the experience into a positive motivation rather than another reason to add to my brain’s list of “Why Katie sucks”!! Sending so much love your way and I hope you had a good Easter weekend ❤ xxx
Another great blog, Katie!! I so wish there was a “magic” potion or pill that could make all your issues go away forever!! However, we all know that that is not how real life works. I know your parents love you unconditionally & will never give up on the hope that you will get better!! Don’t you dare give up on that hope either! You are very talented & gifted!! Keep on blogging & drawing & touching lives in such a positive & entertaining manner!!❤️❤️🙏🙏
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Thank you so much Janie! I must say I often wish there was a magic pill or potion too! That said it means THE WORLD to have the love and support of people like my parents and you all the way across the Ocean. It may not be a magic potion but it does feel pretty magical in its own special way and for that I am eternally grateful. Thank you so much for supporting me and for holding the hope on days I find it hard to hold it myself. Sending so much love to you and the family ❤ xxx
I’m so sorry to hear that. But you are not alone in this. My mother also doesn’t have a job and she takes care of me ALL day, so I can relate to this a lot. It’s so frustrating and I feel so selfish all the time. And having my brother and my father constantly reminding me of all what she does and has done for me, doesn’t help. They like to blame me for everything of bad in my mother’s life. Every time my mother is sad, their first question is “what has she (me) done this time?”. I’m really sorry to hear what you are going through 😦
I’m always here if you ever need to talk.
Kisses from Portugal ❤
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Oh dear I am sorry to hear that you are in a similar situation! That said I have received some really helpful comments over the past few days and they have made me feel a little better. I think we need to remember that although we feel very selfish all the time it is not our fault that we are unwell and being unwell is not a choice we can be blamed for! Also a lot of mothers have reached out to me to say that they WANT to help their child as much as they can which sort of makes support from parents a little easier in my head because I know they do it primarily because they love me as your parents do to! Try not to feel too bad about it sweet, you cannot be blamed for struggling and one day we will be better and able to thank our parents for support during a difficult time in our lives. Sending lots of love and kisses from England ❤️ xxx
I am so, so thankful (as I know you are, too) that you have such loving and supportive parents. If only love alone could cure…
I’m sorry you came across that letter; seeing that reality in black and white must’ve been so hard, but it’s true that we need to acknowledge the impact our illness has on the people around us. I live alone, a mile away from my dad, and in truth I can’t manage on my own. Not even close. More than anything I wish I could move back home and have him support me, but I know I can’t for many reasons. I feel like I’ve disappointed and burdened him enough with years of craziness – now I just try to stay ‘out of sight, out of mind’ as much as I can. I used to call him or my sister every time I had an ‘episode’ or whatever, but now I just… cope alone instead. The guilt of being a burden is greater than the reassurance/support I get from asking for help, if that makes sense?
Anyway, I truly hope their letter has some impact and you can be given the appropriate intensive treatment you need right now. I’m sorry it’s such a struggle for you lately – it makes me all the more thankful to see new blogs from you! Chin up, little bird x
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Ok first of all, thank you for such a lovely comment about my blog and for calling me “little bird” which was rather adorable. More importantly though, I am sorry to hear that you also struggle with the impact mental health problems can have on family members. Still if I can say one thing I would like to tell you that as much as you feel like a burden, THIS IS NOT THE CASE. Don’t get me wrong, I feel the same and can relate to everything you said here about wanting to keep yourself to yourself so that you don’t cause pain to others, but I still want you to know that being mentally ill is not your fault and not something to feel guilty about. Obviously our heads can make us feel guilty for a lot of things but when it comes to the “being a burden” issue, your head is lying and I am sure that your family want to support you as much as they can. Ok they may not be able to all the time but in times when you are struggling I think it is OK to reach out because at the end of the day they love you and wouldn’t want you to suffer. If that is too hard though, please know that if you ever need someone to reach out to that I am here and will do anything I can to support you. Sending a lot of love and hugs ❤ xxx
As a parent with a child in similar circumstances I can say it is a labor of love. I see it as we are in this together and fighting on the same side. You are very special and fortunate to have loving parents. You have many gifts that make your parents happy and proud I’m sure, not the least of which is the gift of the written word and a wonderful sense of humor that they would never want to be without. Your blog is inspiring and you are quite courageous!!
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Thank you so much for this comment! It is so lovely to hear from a parent in a similar situation with that attitude. It is so touching to hear that you see it as being in a team together. I think when that when someone has that kind of support on their side they are halfway to winning the battle because a team of people fighting mental illness is a hell of a lot stronger than one person fighting alone. Thank you so much for being so kind and thank you for being such a wonderful human and parent to your child. I wish you both a lot of love and support ❤️ xxx
I just wish you’d know how touching your words/you are. I can’t really express.
‘Funnily’, I am Katie, too. I have read some of your posts – interesting!! And good to read that you are so open about your mental health problems.
I have experience with OCD myself and have just finished writing a book about it. It’s not a self-help book but a novel, called ‘One Of Us Has To Go’. It fits externalizing/personifying OCD perfectly. It could also be read from a point of view you described here in this post about carers’ lives being affected, although it is not the main purpose of this story. It is a little ‘twisted’, so ‘reality’ will only be clear right at the end.
I must say I find it touching the way your parents seem to deal with you – wish all parents were like that…!
I’d love to ‘invite’ you to have a look on my website (www.oneofushastogo.com) and check out some of the excerpts, if you fancy.
Feel free and hope to ‘see’ you there.
Warm regards from Canada,
Ooh that sounds so interesting! Thank you so much for the recommendation, I will have to take a gander! Good luck with it all! xx
It would be great if you had a look 🙂 – maybe left me a comment. I have only just started my own blog.
I have always hesitated, and still am, about telling exactly what my novel is about (as one obviously needs to read it until the end) but as I can’t stop thinking of the ‘risk’ that you, as an OCD-sufferer, might feel my story starts particularly harshly, I’ve decided to let you know that the main characters in my book (Sonja and I) are actually the same person (I can obviously not give that away on my own blog/website). The reader doesn’t know this until the last page (unless they can guess it but I am trying to keep them in the dark). I wanted to write my story this way.
In the story, I am healthy and it is the other girl (Sonja) who has OCD (=externalizing it).
In reality, I have suffered with OCD for 30 years (I am 40 now). As you will know, OCD is debilitating and it has driven me into a position where I had to find a way to make some money and I am hoping that a good novel, that will also be interesting to readers of mysteries, can expand my market.
You are a different generation and I am very glad that you know so much about mental illnesses. And I am very pleased that your parents care for you that much! (Let them know, please!)
I didn’t know that I had OCD until I was 19 and my parents had asked me to move out from their house when I was 18, because they couldn’t cope with me and my struggles anymore. I was still at school.
Now I am extremely lucky to have a partner who cares for me. Without him I would literally be lost and possibly be living in the street. He’s an Englishman by the way (I am German) and we live together in Canada.
I have been able to improve my OCD during the recent years but I was already 36 years old by the time I started ‘changing’ within myself.
I’d love to think that you won’t have to ‘wait’ for improvement another 13 years and wish you ALL the best on your journey!!!