#SamaritansRadar Twitter App – my thoughts on why this is extremely problematic

(CN: discussion of mental health, suicide, elements of self-harm)

This will be another mental health post, this time centered on the Twitter app that mental health and suicide prevention charity Samaritans have launched, called Samaritans Radar. You can read about this app on their website in this link: http://www.samaritans.org/radarpress The basic premise is that a user can sign up to the radar, and it will then scan the Tweets of people they follow on Twitter, flagging to the user if certain keywords are used that imply mental crisis or suicidal ideation. The user can then view their friend’s Tweet and make a judgment call as to whether this requires further action. Sounds good, right? Friends can look out for potentially vulnerable friends and step in when it seems they’re having a crisis. Here’s what I and many fellow sufferers of mental health conditions find problematic about this app. Now, I don’t think I have anything new input that hasn’t already been said by others, but I would like to have my say and add my voice to those of us protesting the issues around this app. I do want to throw in here in case people don’t read to the end that Samaritans is a fantastic charity and offers a lot of great help to people in very acute crises. For many people this has meant they were able to resist a suicide attempt when they might not have otherwise. I’ve read that the app is in no way associated with the volunteers who run the 24-hour phone service, so please do not feel discouraged about contacting them if you need to.

Many of an individual’s Twitter followers are strangers, not friends
The app is based on the Twitter list of the user, not those who may be in crisis. This means that, should I mention suicide or self-harm in my Tweets, any stranger who follows me and also uses the Samaritans app would get an email about this. I find this idea very uncomfortable and invasive, that followers whom I don’t even know would get specific emails highlighting the app’s perception of my mental health state and prompting this stranger to do something about it. You may be thinking that support must be good whoever it comes from, right? Well, no, not really. Support can come from myriad sources, but in general, if I were in a suicidal frame of mind and in acute crisis, the type of help I’d be looking for wouldn’t be from a stranger on Twitter who needed an app to alert them that things weren’t well with me. You might also be thinking “What’s the big deal; they’d see your Tweets if they follow you anyway.” It’s the idea of being monitored by strangers for what they perceive as signs of suicidal ideation, who are then prompted by an app on what steps to take. I think if you need to be altered via an app that I may be in crisis, then we’re not close enough for you to provide the type of help I need, anyway. The app would be much improved if the mental illness sufferer, i.e. the “targets” of this help, were able to provide a definite list of who could and could not be alerted by this app. Close friends and family being alerted of vocabulary that seems suicidal is a much better idea than any potential follower being able to take some form of control over my mental health, an idea which provides a nice segue into my next point.

We must have agency over our own mental health
There is something very unsettling and invasive about the idea of others deciding that I’m suicidal or depressed enough to warrant their intervention and/or the introduction of outsiders without my explicit consent. This is pasted from the Samaritans website, in the link I posted earlier (emphasis mine):

“Twitter’s wider collaboration with Samaritans includes a referral process which works in two ways: Twitter has Samaritans listed within their Help Centre as the go-to organisation for suicide prevention in the UK and ROI. When somebody gets reported as suicidal, the Twitter Trust & Safety team verifies the report and if they deem it accurate, they get in touch with both the reporter and the reported account, to share recommendations and contact information for Samaritans.”

Everyone I’ve spoken with or whose words I’ve seen about this would *NOT* appreciate this. If we are deemed to be suicidal by particular Tweets, when we may or may not actually be acutely suicidal at that moment, someone would “report” this in the name of help and we’d be contacted by outside sources whether Twitter or Samaritans or whoever. This removes agency; we have the right to control over how we deal with our mental health and don’t appreciate this control falling into the hands of strangers on Twitter, who decide that we merit intervention without actually talking to us about it. If you’re not close enough to send me a message offering support or asking how I am, then you’re not close enough to justify the involvement of outside elements. Many of us have different ways of coping with fluctuating severity in our mental illnesses; strangers will not know those nuances well enough and will likely try to involve outside elements when they are not actually needed.

Now, I’m aware that to some extent that the idea is for people who have lost an element of control and may not be able to help themselves in that moment, but you have to remember that these people have entire lives and other contacts, close friends, family, fellow mental health sufferers on their TL. Preventing their potentially imminent suicide probably isn’t contingent on your report if you are an effective stranger on Twitter. You also have to bear in mind that many people without mental illness tend to offer support and comfort via platitudes that actually tend to make things worse, but that’s another post altogether. Maybe I’m overreacting and people wouldn’t go to the extent of “reporting” if they are virtual strangers to the person in crisis. But that doesn’t mean this will never happen. Anyway, the point still stands: Do NOT involve outside elements in someone’s care without at least contacting them first. If you are not a close friend or family member, you will virtually never be justified to involve outside elements without consent, in my opinion.

It’s a “cookie cutter” approach
Using so-called key words and phrases to detect someone’s suicidal ideation is hardly going to be an exact science. People suffering from mental illnesses are a diverse bunch just as any group will be and we have different ways of coping with our health, with changing circumstances and different words we use to convey these issues. Some people are very explicit even when not in crisis, whereas some don’t mention things even if a suicide attempt is imminent. Personally, I think I am less open about mental health in general when I’m struggling, so if I were suicidal, the clue would be that I *don’t* mention these key words. I don’t know for sure; what I do know is that there is no set of clues that a person puts out when they are suicidal. One person’s “normal” might be another’s “in crisis” and vice versa. I know people who might mention that they are considering methods of suicide at a point when they are not in immediate crisis and don’t need intervention. I know people whose key words when they are suicidal are more likely to do with making plans, finalizing something, getting their affairs in order, becoming content or relieved (mostly because they have decided to make the attempt). The app’s approach will not pick up on all these nuances; it will give many false positives and miss many genuine positives.

What people also need to realize is that for mental illness sufferers and mental health advocates, many of these words and phrases are part of our general, everyday vocabulary. I talk about self-harm often, sometimes when I’m doing it/have done it that day, worried I’ll relapse soon, and sometimes when I haven’t done it for a long time. Many of us mention suicide a lot whether we are having suicidal thoughts at that moment or haven’t for a long time. You might say “Well, the user will see the Tweet and realize it’s out of context”, but it’s not as simple as that. If I write “I can’t stop thinking about self-harm”, you have no idea what I mean by that. I could mean I’m fighting the urge from minute to minute and need immediate intervention or I could mean that I’m in a temptation phase where I know I won’t do anything and that it will soon pass. I often have periods of intense fantasy about self-harm and suicide methods without there being a big danger of me actually doing it. Often the imagining itself is a great comfort. So did that tweet need reporting or not? What if it had said “I can’t stop thinking about suicide”?

The potential for abuse
Finally, the lack of privacy concerning the app, which is intrusive and unsettling as it is, provides a potential for abuse. Many people may have a stalker following them or trolls, who would then take the opportunity to harass someone who may already be in a moment of crisis. Also, many people suffer extreme mental distress even in periods where is little or no risk of them actually attempting or committing suicide, and the last thing anyone needs in those periods is being harassed or trolled. Even people with good intentions can make it worse by offering platitudes.

Basically, I and many others feel like they have done very little or no research with actual sufferers of mental illness on Twitter. It seems to have come from “higher up” where they thought this was a good idea without asking the people concerned. The app could be much improved if the people being monitored could explicitly choose a list of those who would be contacted in the instances of tweets suggesting suicidal ideation. Twitter is a place where many of us who suffer from mental illness find we can be open and often already we receive an enormous amount of support. My fear is that this level of monitoring and intervention will make people shut off. I and many people I know have already explicitly stated that we do NOT want any of our followers using this app to monitor our Tweets. If you want to show support to your friends, try sending a message, ask how they are, if they need to chat or vent, if they need support. Many people don’t know what to say to someone in crisis, and that’s o.k. If you are not a mental health professional, then your friends likely don’t expect you to be able to always say the right thing. Sometimes just an offer that you’re there to listen or even just a sending of virtual hugs or a ❤ can be enough. It means we know you care but may not know what to say.

I hope that the better elements of this app can perhaps be developed into something better and it raises awareness of the problems surrounding this kind of thing that people without mental illness may have never considered.

TW: mental illness, suicide.

TW: mental illness, self-harm, suicide

I haven’t written here for a while now, but I will get onto the general update posts after this one, as I just feel I need to get this all out. (It ends up quite long, and me somewhat rambling about mental illness in general.)

Most of you have possibly already heard the awful news about Robin Williams, who has apparently committed suicide. As I’ve been feeling on the brink of a self-harming relapse for a while recently, this has really hit home to me that some of us really are “lifers” in depression. We get over episodes and feel good, but down the line we don’t know how bad it might get again. I’m somewhat come to terms with this in general, but it’s still hard, of course. So, I just want to use this space to get out everything I need to, and I hope that people don’t see this as me trying in anyway to hijack and derail this tragedy. I hope Robin has finally found peace and he and his family are in my thoughts. I hope to find strength from the loss of a fellow warrior, and I hope that the rest of you in this fight can too. I just want to write this mostly as catharsis for me, but also to educate people some more on what it’s like to fight this, to suffer from mental illness, because, while I haven’t seen any horrible comments relating to Robin, I know that they’re most likely out there and I probably will come across ignorant comments, some intentionally vile, but some from ignorance. I’m trying to fill that void of ignorance for those who are willing to listen.

I’ve suffered from depression and self-harm since about age 10, and I’m what I call a “lifer”. While therapy, medication, and simply time can help in a specific episode, I inevitably will relapse later down the line. I’m aware of this, it’s been happening for more than half my life, and in some ways I accept it. It’s been easier to deal with knowing that a relapse is inevitable; I feel more prepared and feel I can be more open about it than if I and my family pretend that I’m “cured” after an episode wanes. Right now, I am recognizing the signs, and it may or may not turn out to be an actual relapse with harming; sometimes it passes, sometimes I pass an invisible line without having actually harmed again yet where I know I can’t stop it. Maybe it sounds defeatist, but knowing you’re relapsing with a physical illness doesn’t stop it happening, rather it makes you more prepared to deal with it. And as I often say, I’m a proponent of the fact that mental illnesses are physical illnesses that affect mental processes (and often physical ones too actually).

In psychology, I didn’t find therapy helpful for a long time because we were pretending, basically, that I could end the cycle through changing the way I think alone. Well, part of my therapy was to accept that negative things happen in life, and so by a certain point, I told the therapist that this was also something I needed to accept to be able to cope with it: my mental illness, just like my physical, is incurable. I will have good days and bad days, good months and bad months, but I must always be prepared somewhere in my mind for a relapse. Same with the lupus: I spent a lot of time deluding myself that it wasn’t going to get worse, that somehow someday I’d have my old life back. Well, all that did was cause me more upset and disappointment, waking up to find that I wasn’t better, that I was sometimes worse. Coming to terms with the lupus being permanent helped my mindset a lot, and so did the acknowledgment that I was never going to be completely “cured” of my mental illness either.

If you don’t suffer from any form of mental illness, or not so chronically, it can be hard to imagine being in a state of mind where self-harm or suicide seems tempting. Believe it or not, in my good phases, I also can’t imagine wanting to cut, enjoying that pain. I think of some of my worst wounds and cringe hard. I think “How could someone do that to themselves and be able to bear the pain and the gore?” Because to do these things, it needs a certain mindset to do it. It’s not the case that when you’re feeling absolutely amazing that you just think one day “Hmm, I think I’ll cut or kill myself”, even if it seems that way to outsiders, although episodes can come on so suddenly during what you thought was a good phase: my worst wounds, where I was hospitalized, were inflicted the very day I graduated from uni. But even from the graduation to the harming, a swift change of mindset took place. Darkness had settled in.

People have called those who attempt or have committed suicide cowards. They say things like “man up”, that everyone goes through shit and that people should just hoist themselves by the bootstraps and cope. I’m a believer in optimism, and a good attitude can take you far, but it is not miraculous: optimism isn’t going to magically sort out the biochemical imbalance of my brain or indeed cure my lupus by altering my immune system so it stops attacking my own body. If you’ve thought something along those lines, that suicides or harmers are attention-seekers, cowards, that you think they’re beyond help, try this: imagine a bad day you’ve had, a day where for no pinpointable reason you felt inexplicably sad, angry at life, apathetic, perhaps, where nothing seemed to go right, or even though everything was going right you still felt this way, when it should have been an easy case of you saying to yourself “just cheer up, have a positive attitude”. It didn’t help? Sometimes it doesn’t. Sometimes there’s absolutely nothing you can do on a day like that except let it pass. Now imagine that bad day stretched out over weeks, months, years, with no end in sight, and no matter what you do, that darkness, that cloud just doesn’t let up. Would you be a coward for wanting that to end?

I do have days where kicking myself up the bum helps. I have days where I’m moping about and changing my attitude changes everything. But that’s not what I’m talking about, and that’s not what depression is.

Now, it’s not always so explicably constant for people. Many people with depression have amazing days, have weeks or even months where they are, to all outward experience, just fine. I’m not talking people putting on a mask, although that’s a whole other problem. I mean that even while depressed, people can actually have good days. Take grief for example, which is a kind of depression in a way; people grieving have days even in the midst of their grief where they genuinely enjoyed themselves and generally forgot about the loss. Because people with depression can have those intermittent days, or indeed long gaps between episodes, people often thinking we’re not as ill as we make out. Often when people commit suicide, friends and family will say “But they’d gotten much better”: sometimes this apparent improvement is a result of the decision of suicide, which often takes the weight off someone’s shoulders, removes their burden, but also sometimes someone did genuinely get better from an episode and then relapse, which the family doesn’t recognize because if you’re better, then you’re better, surely?

A friend of mine has recently been feeling generally down and dissatisfied with life. When I suggested to her that she was depressed, she said she had considered it, but she had decided she wasn’t, not because things didn’t point to that, but because she had been made to think that being depressed meant constantly crying, not being satisfied with any part of your life. I told her that personally I never cry for myself–mind you, I think part of that is due to having hidden my true feelings, mental and physical, for so long–and that doesn’t mean much in terms of whether you’re depressed or not. I explained to her that many people go through it for a relatively short time; if she’s depressed now, it doesn’t mean she has always been or always will be. But some of us are lifers, and it’s certainly not due to a lack of strength.

This has gotten very long at this stage, and I’m not positive exactly what I wanted to say with it. I just feel that people who are most dismissive of disease, whether mental or physical, are people who complain most about the little things in their own lives. I’m not saying that people can’t complain, but when you act like the world is over because you had one shitty day and then dismiss people who go through worse every single day, it’s kind of crap. Some people make ableist and ignorant comments based on just that, ignorance, but I’ll know the difference when someone make the effort to listen to me and try to understand and makes an effort to change their thinking about mental illness, their ignorance. So often with disability and ableism in general–in fact, in any social oppression issue, really–I’ve had people who think they are “allies”, they try to support the disabled community, but when one of us comes along and says that they’ve said something ableism or that we find an issue with, they often walk out of the conversation, acting like a rebuked child, thinking it’s unfair because they show support for us and we “pick holes in it” or something. Those people are not true allies. On the other hand, I’ve had people, including my twin sister, who’s been there for all my life through my struggles with physical and mental illness, who say ableist things, and then when they’re called out on it, they apologize sincerely and take it on board to try to adapt the way they think about disability and mental illness, which they have no first-hand experience of.

Basically, I’m just asking people, if you haven’t experienced this first-hand, don’t jump to making ignorant or mean comments about Robin Williams or any other sufferer of mental illness. Read and listen to our words to try to understand what it is we’re going through and how you can help. I understand, it’s awkward for you. I can think personally where I’ve been comforting friends who are going through tough times, and I know that sometimes you don’t know what to say. You’re afraid of saying the wrong thing. Listen to your loved one and try to engage with others’ experiences, particularly online, and if you do say the wrong thing and are called out on it, apologize, take it on board, and don’t make the mistake again. You don’t have to have a degree in psychology or psychiatry to support people with mental illness: mostly we just want to know that people are there for us if we need them. Don’t get offended if people then don’t vent to you or confide in you; don’t get offended if your partner or friend or family member is still struggling no matter how much you help, don’t get offended if you get called out for saying the wrong thing or something ignorant or ableist, no matter your intentions, because out of being told you said something insensitive and being dismissed or hearing a cruel comment when you’re trying to fight this, I think we know what’s worse.

Just remember your own bad days and consider how that must be to cope with, day in, day out. Don’t blame us; be there for us. You wouldn’t blame or dismiss a relative with cancer; you’d probably do whatever you could to support them and make sure they’re comfortable. Well, it’s not all that different, really. The main thing is try, and if you’re wrong, adapt.

I hope that Robin Williams is at peace, and I hope that those of us still here in this fight can find strength. I’m hoping I don’t continue down this slope to a relapse, but I know I might. And I know that even if I don’t fall down it this time, there will most likely be a next time. Yes, I am a “lifer”, and it’s scary to think that at any point in the future, I could go back to my worst place, I could find myself in Robin’s position. And so I believe in being as open as I can about my struggles–that doesn’t mean during my episodes, I can talk to family for example about my thoughts and worries, because I most often can’t, but I won’t be ashamed to stand up and say that, yes, I suffer from depression. Yes, I take medication for it. Because if we’re going to help those with mental illnesses and prevent people from taking the final step in removing themselves from their pain, I believe we need openness and understanding; many of us have hidden our struggles because we don’t want to hurt loved ones or make them angry, and suffering in silence is one way to worsen it, to let it progress, sometimes to a point where it’s too late. Please support your loved ones in this fight, even if you can’t understand it fully. I personally have found the panicking about being caught harming worse or just as bad as the feeling that drove me to it, and being able to say to my sister, yes, I did it, and make sure the wounds are cleaned and uninfected, has helped me beyond words. It doesn’t mean she “lets” me do it, it doesn’t mean it doesn’t upset both of us, but bear in mind that guilt is often the strongest emotion in mental illnesses, and is often the one that leads to suicide, so please try not to produce even more guilt in us by blaming us or getting angry with us.

RIP Robin, and all the other warriors we’ve lost.

Bite-size goals

I didn’t want most of this blog to be about mental health, but I don’t mind that that’s how it seems to be turning out; after all, the mental health effects of lupus are often neglected by most people. Of course any chronic illness can cause depression in itself, and lupus can directly affect the brain, or, as is my case, it can make existing mental illness worse.

Making goals for myself has always been something I aim to do (I aim to make aims, haha) to boost my productivity, which has taken a dive since I graduated and have been back living with my parents in a small town instead of the city. As my health has gotten worse and my stamina has decreased, it makes things even harder to keep up. I know I’m the type of person who likes lists and being able to tick things off them, and I enjoy being able to see progress in numerical goals, such as how many books I’ve read this year and watching the percentage increase. Last year I had set up spreadsheets with goals in it for each month such as how many words I wrote for my novel, how many poems I wrote, how much I earned on Freerice, how many quizzes I write on FunTrivia, and so on and so forth. It helped if I was sitting about thinking I want to do something productive with my brain, then I could look at the list, and think “Oh, I didn’t do much translation this month”, and then work on that.

But eventually, the maintenance of the spreadsheet became a task on its own, and I started to neglect it to the point where I haven’t updated it for about six months. Similarly, I downloaded a To-Do list program on my computer, but setting it up with all my goals became a mammoth task in itself!

My psychologist suggested I keep a journal with my sister where on a set day each week we write down problems or things we want to sort out, such as ideas for careers. She said to write down the next small steps in each goal, or any problems we’re having in general, and then next week come back to the book and note down any progress we made. My occupational therapist keeps getting on at me for walking in and saying “I need to sort out my WHOLE LIFE.” She emphasized that I need to cut my goals down to smaller chunks: instead of “I must catch up on the entire backlog of laundry, I should sort out and wash one bag of clothes this week.” But I would write down goals when I was with her on a sheet of paper and then not really look at it until the next appointment where I would confess to having done virtually nothing!

Recently, as the weather improves, my sister and I are really getting going on spring cleaning and pushing ourselves toward productivity again. I’ve been talking with a few friends fairly recently as well about setting small goals instead of large ones that we’re less likely to embark upon never mind complete very soon. It is so difficult balancing physical and mental health, and there’s just no point in me getting geared up in a session with my therapists and saying “Yes, I want to sort everything out, I’ll make a massive list of goals and actually do them”, and then find in the coming days that my body’s not having it like that!

I believe that actually more can get done with many small goals than if you wait until the mood or right conditions take you for a larger goal. To use tidying the room as an example, I find that it takes a long time until I can even face a session of a big tidy up, and if I spend a few hours on that, I’m going to be paying for it for a long time, and so I can’t keep it up as regularly; usually by the next time I manage to go for a long session again, the room has recovered most of the mess from last time, so no progress is made! More can get done if I say to myself that I will tidy for 10-15 minutes a day, for example, or set a specific goal such as “Sort out the bookshelf” and only do that even if I feel up to more. This means that I will be a lot more likely to do another task the next day. So it seems kind of paradoxical, but I think this method works for me, and more gets done with smaller tasks than large ones.

So, for some inspiration, I thought I would start committing to small goals on this blog. I find that I’m more likely to carry things out if there’s someone I have to come to and say “No, I didn’t actually bother with that this week”! I’ve decided to simply set five goals each Sunday (happily I was busy yesterday categorizing my 300 DVDs into alphabetical order to write this post yesterday; they’re now filed away in the cupboard instead of my desk so I have a semblance of a working space!), with no numerical component: it won’t be “Write ____ words for my novel” this week, but simply “Work on the novel”, even if this is only 100 words, or Hell, even one! It won’t be “Complete the crochet project this week” but “Work on it”.

This is a nice combination of both therapists’ suggestions, I think, and I believe it will help boost my productivity long-term more than the things I’ve tried previously (which often work great in the short-term but it’s hard to keep up). I think as well, even though some of the goals will end up things I would have done in the week anyway, marking it up as “completing a goal” will boost my self-esteem and feeling that I’m getting things done! I’m not going to keep track of how many I complete and how many I fail; I want each week to be a clean slate. I am quite a meticulous person with perfectionist tendencies (see above with the DVDs; I have spreadsheets of my novel’s word counts, a four-page one for my books, haha) and wanting to tick off goals each week will hopefully spur me into things. We’ll see!

Feeling better

I didn’t want to leave the last post without any follow-up. I wasn’t really 100% in the right frame of mind, and was worried I was on the brink of another big mental health relapse. I can’t say for sure that this storm has completely passed, but in the last few days I have a sense of normalcy again at least.

I told my sister immediately when she came home what I’d done, and she was so good about it, making sure the wounds weren’t too severe, which they weren’t, and that I was o.k. She reads this blog, and it’s good for her to get the insight of what I can write down but can’t bring myself to say aloud face-to-face. 

A few days after she asked me to come meet her after work and we would go for coffee, nothing too dramatic. I’m ecstatic to say that I did make it, although physically I was struggling. It was only my fourth even vaguely social event of the year (twice volunteering an afternoon in my charity shops, my niece’s sixth birthday dinner), and when I got up that day, I knew I was struggling physically, but I also knew that there was the mental block there, and I knew getting out would be good for my mental state. I barely made it up to the bus stop even with the walking sticks, but I was glad just to get the fresh air! I’m getting cabin fever seeing this bedroom all day every day!

We met at her work so she could show me some coats she was thinking of buying, to get my opinion. Then we went to her work’s café for some lunch and coffee. I did spend much of it telling her, a classics graduate!, about the details of the second Persian invasion of Greece, but she and I often talk about detailed subjects, haha. She left me there while she went to the gym for an hour, so I could work on my novel; it has been such a long time since I just sat alone in a café, earphones plugged in, writing. I did it all the time while I lived in Glasgow for uni, but it’s rarer these days, as I mainly leave the house to do something in particular.

In honor of World Book Day, we also popped to the library – and as always, I maxed out! I was thankful to be on the last library book I had, but now of course I have many more to get through (I should stay away from the library, as I’m overflowing with physical copies of books at home that I need to read and get rid of!). The librarian knows me well enough by now, and kindly overrode the maximum so I could also pick up the books I’d reserved.

Nothing too much has changed, but I have been glad just to get out again. I haven’t explicitly harmed again in the meantime, and today I started on my translations again. My sister has also acknowledged sometimes she’s been unfair with me – but she’s mostly been absolutely amazing and I don’t know what I’d do without her. In her “unfairness” it’s mostly been things like acting disappointed if I can’t help with the food or something, or come out, and she doesn’t explicitly say crappy things to me about it! Anyway, we’re so close, that usually I can say to her if she’s having unrealistic expectations of me! 🙂 Right now she’s making our dinner, and she saw my face because I felt guilty not being able to help, and said it was absolutely fine, because she realizes she’s been a bit unfair recently.

This is her two weeks off from work, and we wanted to completely tidy the room, but I don’t think I’m going to be able to be much help any time soon. But hopefully Mum will agree to help and I will be able to sit on the bed and organize things, as we’re spring cleaning.

Unfortunately, we had planned a trip on these weeks off, maybe just a few days down somewhere in England, and I feel bad that we’ve had to cancel, but my sister is being amazing about it, even though of course she’s disappointed and for a while felt I was just being obstructive. We’re planning just a few outings here in our city this time, maybe a cinema trip, and a meal at a restaurant she’s wanted to take to me for ages. And when it gets further into the summer weather and she can get another two weeks off, we will plan the trip to York, Bath, Oxford, London, we can’t really decide exactly where! By the time I had mentally prepared and decided I wanted to go somewhere and get away from familiarity for a while, the lupus flared up and I knew there wasn’t much point going if I had to really struggle just walking. We’re thinking of buying a lightweight travel wheelchair though, which should help a lot, and I’d be more eager. 🙂

I’m feeling optimistic just now, but cautiously. I always told my therapist I am a “realistic optimist”; I hope for the best but prepare for the worst! I’m just taking things a day at a time just now, and hoping that the meeting with my ESA work adviser this month gets me going a bit more with career plans, but I’ll take it slow. I’m still considering going back to psychotherapy, but maybe to see someone else; my therapist Caroline was absolutely lovely, but I don’t know what else we can go over, and think maybe a second pair of ears might help.

Vent (TW: self-harm)

TRIGGER WARNING: self-harm, mental health

I’m having a very strange time right now, and I thought what is this blog for if not for me to get these things out? The people from my life who know who I am and perhaps read this blog are people who are closer and know more detail about my issues, and so it’s not loads of acquaintances reading detail I “shouldn’t” be sharing.

A few weeks ago I relapsed relatively minorly with cutting. It was just a few, and it came after I was really down about my life, and was talking to my mum and sister. I haven’t been out of the house for ages for myself, my room was an absolute dump, I’m not organized, I have no further ideas with career, I put off booking a trip with my sister… Generally, I’m just tired and annoyed at myself. This talk wasn’t so serious, but I was lying down saying how pissed I was and that I hate my life right now. I thought I was going to cry, which is big: I’m so used to keeping emotions inside that I pretty much never cry for myself now. I often have incidents where I know I’m sobbing inside, but outwardly I’m rather stoic. I’ll cry at movies, news stories, and things like that, but even I’m desperately unhappy, it’s hard for me to actually shed a tear for myself. The last time I got very close was after I was cracking up in the hospital; I was in for a few days for surgery but then had to go back in for a week or so after the wound got infected and reopened. I’d only gotten home for two days or so, and it was in a different city so my sister couldn’t be there all the time; I usually cope fine alone, and last year I was in hospital 100 miles away for a few days and coped fine with no visitors, but after it was approaching two weeks this time I was just cracking up; I had no internet, and I wanted to learn things. I found I could only read so many books and write so much of my novel before I needed other things that I usually do.

Anyway, the wounds weren’t too bad, they gave me a bit of release. I felt better and hopeful again about life and was proud of myself that I hadn’t gone further with the cutting. I did it again a few days later in the shower; this was worse, but still relatively minor, and I soon had the courage to tell my sister I’d done it, which greatly lifts the burden of having to make sure no one in the house sees it. So far, so good. I talked things through with a friend who’s recently been to Hell and back, and we were both feeling hopeful. I still had the urges (each episode is very rarely only one “session” for me), but I still felt pretty good again about life, and although I haven’t been out for non-medical reasons, I did write about 1000 words for my novel which ashamedly is the most I’ve done in a long time! (I usually freak out when I’m getting to the end of them, and then it takes me ages to get through it!)

Then yesterday was very odd. I swear I got up at something to 6pm, and I even Tweeted not long after that saying how I was annoyed at the fact. My sister was working, and I am positive she called me when I was already up and online, and she too says I was very alert and she thought I was up. But she swears she called me at something to 4, before her shift, and her phone confirms it. I was absolutely positive I had not taken a phone call while in bed – but my online activity shows I was up about 6 as I thought, not before. So apparently there is about a two-hour period where I can’t account for myself. What the Hell was I doing? There’s a chance I did take the call in bed, but my sister can often tell by my voice whether I’m up or not (even if I’m still in bed but awake), and I’m sure I was up, because I was going to ask Mum about something just after it, but my parents weren’t in.

The brain fog I suffer with lupus can mean that I forget things that happened the same day, but this is just weird. And I’ve just gone downstairs and harmed again. My main method is cutting (or picking skin and nails); sometimes I do burn, but very minor ones, e.g. dripping hot oil on my hands when I’m cooking fries. Today I threw a small cup of boiling water over my arm, which is an escalation for me; I’ve never done that before. I did cut too, and they’re not too bad, but I have a considerably wide gash in my elbow that I have put a dressing on; I’m also not one for treating my wounds much, I usually just mop up, let them dry out, and leave them, which is what I’ve done with the rest of my arm that isn’t the elbow gash.

I don’t know. I just feel like I’m cracking up. The thing is, though, I feel fine now! I’m sitting here quite fine, writing this post, but I know it’s probably that detachment I get with harming, and also the release. Self-harm is such an enigma. I wonder if I should pursue psychotherapy again; my psychologist and I were going round in circles, but I wonder if another therapist’s input would help. Not that I can even think what they can do for me. I was doing acceptance and commitment therapy (ACT), and in the sessions, everything made perfect sense to me. I agreed with the steps I should take, and identified my values. Yet when the urge takes me, I dissociate; logic goes out of the window. More often than not, my harming is unrelated to what’s going on in my life, so it’s not as though I can combat the issue that’s causing it. I often think it would be easier for me if I did have an identifiable trigger – that way, both I and my family could be more watchful. I mentioned psychiatry to the psychologist, because of this dissociation and the fact that behavioral changes didn’t help; on fluoxetine, I find that I can postpone the episodes of harming more, deal with the urges more logically, but there is a threshold beyond which I know it’s inevitable and nothing can talk me out of it. We couldn’t identify what that threshold was. I also think I held back a bit with her. I don’t know. I don’t necessarily think I have a psychiatric disorder; I’m diagnosed with chronic depression, but my harming also doesn’t necessarily coincide with the episodes of depression. Usually in an episode of depression, I will harm, but I often harm outwith them too.

Uggh, I’m just rambling here, which was actually the point, I guess. I’ll tell my sister what I did when she comes home. I just wonder about going to the doctor again with this AND the autism worries; they’re definitely going to think I’m a hypochondriac in spite of my diagnoses. I don’t really have people I can talk to face-to-face about any of this stuff except my sister, who does her best but of course doesn’t quite get it. I have no friends in my city, really, more acquaintances I volunteer with; although I’m really close to one of the managers in a store I volunteer in, I have no way to contact her except in the store, and I’m not really leaving my house for non-medical reasons. Anyway, I can hardly walk in, and just lay that on her. I don’t know. I’m hoping things level out soon. It’s just scary not knowing what’s going on in this head of mine!

My struggle with chronic depression

Either a mental health issue or a physical one is difficult enough to cope with at one time, but having both can add so many extra problems to life. Many people with lupus or a similarly chronic condition develop depression as part of their condition, or due to the constraints their disease puts upon their life. I’m one of the ones who struggled with a mental health condition before anything physical came along. I wanted to write about my recent relapse, but as the post has turned out more a history of my struggles with depression, I’ll write the more recent stuff in another post.

It’s difficult to say when my depression started, but I know I was self-harming at about ten years old, before life got tough for me in school with bullying, before any pinpointable reason came along to suggest I was unhappy. That’s the thing with depression; it can be purely chemical, and so unrelated to anything that’s going on in your life at the time. My parents were naturally aghast, sure I was being bullied, or that there was another reason beyond “I don’t know”. I think my twin sister and I started quite curiously, and then she stopped, while I found it a reliable coping mechanism. I remember being very young, and I struggled even then with severe insomnia, and would find myself awake at night, hiding under the covers and just crying for no reason I could find. When I think about it now, I also used to have strange paranoid thoughts that “they” were always watching; I had to keep my ears under the covers at all times, and my teddies always had to be under the covers too, because if “they” saw the teddy, they would take it away when I was at school. Every morning I would make sure the teddy was under the cover, and I had some anxious days at school because I couldn’t remember whether the teddy was safely hidden or not.

When I got to high school, suddenly there were enough reasons to fuel my depression. While my twin and I were admired in primary school for our “eccentricity” – we were very creative, wrote and performed our own songs, and that sort of thing – in high school, all of our “friends” from primary school suddenly dumped us. I went through high school being very unpopular and picked on, and unfortunately I think for a long time my sister was caught up in it just through her association with me. I continued to be “weird” – the Goth phase didn’t help the ostracization! – and people either avoided me or picked on me. (Various doctors now think I have a form of high-functioning autism, but I haven’t been formally diagnosed. It would certainly explain a lot about my struggle with social interaction and more.) I was picked on for being quite a loner, for being smart, for being bisexual.

Of course, when I was 14/15, the lupus hit, and suddenly I was absent from school for such long periods of time, and when I did appear, I was pale, gaunt, sick. God knows what people thought. This meant I fell even more out of touch with the few friends I had, and became more isolated. By my senior year, I even had the 11-year-old first year students calling me “f****t” every day! By this point, the bullying didn’t really bother me, partly because I’d grown such a thick skin, and partly because I had my health to worry about, so much that I attempted suicide at 16 in desperation.

Life has improved a lot since then, I loved uni, and I’m much more comfortable about my “odd” social preferences. Still, the episodes of depression and self-harm continue, because as I said before, they come out of nowhere much of the time for me. More recently, I was seeing a psychologist regularly and am on medication. I’m doing all I can do for my mental health, but more and more both my psychologist and I have accepted that self-harm is likely always going to be a part of my life. When the urge overcomes me, my mindset completely changes, and no logic pervades it. Everything that I’ve agreed with my psychologist goes out of the window. I know that if I manage to overcome the urge (before this mindset comes, as is this point of inevitability), it only happens so many times before it culminates in a severe, dramatic incident, such as what happened in November 2012 when I was taken to hospital with cut wrists, refusing to talk or look at even my twin sister. I still couldn’t say whether that was a suicide attempt or not, and more likely designate it “parasuicide”.

But I struggle with the concept of allowing myself to self-harm, and saying that it will always be part of my life on one hand feels like me giving myself an excuse. However, now, if I get an urge, I try not to say to myself, “You will never self-harm again”, because I know it’s unattainable, and I will just feel more guilty if I break this “promise”. Similarly, I don’t count how long I go without harming, because if I ruin a year free of harming, I’m going to feel like a failure. My main coping mechanism at the moment is to tell myself when I feel the urge, “Tomorrow”. When I relapse with harming, it’s usually precluded by fantasizing what I want to do, and then planning what I’ll do, until a point where I move onto action; this is the point I say “Tomorrow”, or even “Later”, or “Next time I’m in the bathroom”. Sometimes this can prevent me from a proper relapse into actual harming; sometimes it just prolongs the inevitable. Something else I did this last time was to tell my sister relatively soon after that I had cut. Sometimes she can tell from my mood, sometimes not. But telling her meant I didn’t have the extra pressure of panicking about it being seen by anyone. I think it helps to tell anyone, even an online friend who can’t be there in person, because I feel it lifts the burden a bit. And rather than guilting myself about it, I think every day is a new day. I don’t tally how long I’ve gone; I take it one day at a time. Cliché, perhaps, but it does work for me.

I think it’s important to give yourself attainable goals, without feeling that it merely gives you an excuse to continue destructive behavior. I know that it’s personally far too reaching for me to say “I’m never going to self-harm again”, so I say “I’m not going to self-harm today“. My occupational therapist keeps telling me I aim too high when I see her, I say “I need to sort out my whole life”. The point is to start with bite-size chunks, short goals that are attainable. This week’s goal is not “Sort out and catch up on the entire backload of laundry”, it’s maybe “Take one bag to the launderette”. I know from experience that saying “This week I’m going to tidy up the whole bedroom, take my unwanted things to charity, and reorganize all my spaces” is simply setting up such a big goal that, even ignoring my physical state, will make me shy away and think “I’m not up for doing so much, so why even start?” But if the goal is “Sort out the books I don’t want and lay them aside to take to charity”, or “Tidy up one drawer”, you can do the task and then stop without feeling like you had to hold up the whole world. After all, putting off a big goal for weeks might mean even less gets done than if you tidied or did domestic stuff for only 5-10 minutes a day.

Anyway, this is my general experience with depression and self-harm. Separately I will write about the issues of the combination of a mental and physical health condition, and why this often still sets me back even when my mental state is clear and motivated.