Question Time!

I am thinking about writing a report or possibly a book in my next year of uni, regarding how personal friendships affect people who live with mental illness. I also want to focus on the role of the internet in outreaching to others in search of help, whether this is good or not, websites specifically for people who live with depression etc

I’d be really grateful if you could all fill in this questionnaire. Obviously, if not enough questions apply to you, don’t worry, but have a look through anyway. Please reply to this post with your answers. Also, if anyone has any ideas for questions I’ve missed, do let me know!

 

How do you classify your mental illness?

 

How long have you lived with it?

 

Are you receiving treatment for it? (therapy, medication etc)

 

Do you feel that your friends and family understand your illness?

 

Have you ever been a member of a real life non-medical group or organization specifically for people who live with mental illness?

 

What was your experience of this?

 

If not, why not?

 

Have you ever been a member of an online non-medical group or organization specifically for people who live with mental illness?

 

What was your experience of this?

 

If not, why not?

 

Do you feel that it is good for people who suffer from mental illness to seek out people with similar problems to help them get better? Why?

 

What do you think the effect of the internet has had in the role of reaching out to others?

 

 Do you think that the internet is a good way of gaining support with your illness?

 

 

 

 

Anarchists living with mental illnesses

Our Dark Passenger is a zine produced by anarchists who live with mental illnesses, about their experiences and about ways for the community to support those with mental health problems. I havnt finished reading it yet, but I thought it may interest some of you. It is available to buy from Katipo (Aotearoa) or you can download and print it from here - inside, outside.

PS - It comes with this warning:

WARNING

Parts of this zine are likely to be triggering to those who have a history of self-harm or mental illness, so please use your own discretion when deciding to read.

If you think you are likely to be affected negatively by this zine, please DO NOT read it!

Please see here for more information.

 

University Challenge: Part Six

Suggestion To My University/Universities In General/The Government: Money, please?

 

I have a part-time job, which I was extremely lucky to get. I work in a lovely shop, with good people. It has a fairly relaxed atmosphere and I don’t feel under pressure. In fact, I actually look forward to being there most of the time. I was worried about getting a job while being at uni because I knew that there would be time, and most definitely energy, conflicts. With all my uni work to do, I wasn’t sure whether I’d be able to handle it. I can’t say it’s easy, but generally having this job is a really positive thing and helps with my mood. The thing is, like most students with part-time jobs I’m on minimum wage and am actually told by my uni not to work more than 15 hours a week. I earn roughly £56 a week… and I pay £37 of that to my therapist.

           

As most people who have tried to obtain therapy through the NHS know, it’s basically impossible. All through my teenage years I was kept on waiting lists, offered counselling instead (which I didn’t find helpful at all) and given anti depressants which generally made my mood drop even further. I started seeing private therapists a few years ago, and eventually I found someone I felt could really help me. And she has. In the year I’ve been seeing my current therapist, I’ve seen such significant changes to my mood that I actually feel like I won’t always be depressed. I’ve felt positive about my life. This is a huge thing.

           

When I look back over my bank statements for the past year I cannot believe I’ve survived up until now without getting (even more) massively into debt. I pay for rent, bills, a monthly bus ticket (which I need to get to my therapist’s office), food, books and my weekly appointment out of my student loan and my savings (which are rapidly diminishing). I’ve bought basically nothing for myself in the way of treats (clothes, CDs etc) because I just can’t afford it.

 

 

I applied for Access to Learning (a grant you can apply for if you are struggling financially). This took forever. I had to obtain bank statements from the last three months, my housing contract and a letter from my therapist’s office, photocopy the whole lot, fill in a ten page form and return the whole lot to the welfare office. This is great when you’ve got little to no time/energy/willpower to do anything… */sarcasm* They took weeks to process it and then sent me a letter telling me I hadn’t included a copy of my Disability Assessment Report which they had right there in the welfare office. I finally had to go to the Welfare office to talk to someone who informed me that I needed to provide them with another piece of evidence before they could begin to assess the application. I was exhausted and feeling terrible. At this point, I hadn’t been eating properly because I basically couldn’t afford food. I broke down in tears in front of the man I was talking to. He didn’t really know what to say. I finally obtained the last bit of evidence and after more time had passed received a letter stating I would receive a lump sum of £691.

 

This sounds like a good result (and don’t get me wrong I’m grateful!) but all it meant was that I didn’t go overdrawn. Within two months I was right back where I started. The money had disappeared: rent, bills and weekly therapy took it all.

           

About a month ago I made the decision that I would try and cut my therapist’s appointments from once a week to once a fortnight. I was not happy about this decision at all, but my situation being what it was, I didn’t feel I had a choice. I had survived a couple of breaks like this when my therapist took time off last summer so I thought that maybe it would be all right…

           

In short, it hasn’t been. Turns out there’s a big difference between weekly and fortnightly therapy sessions. In no time at all I’ve felt hopeless, suicidal and like I’m sliding back into my old ways, how I felt before I started therapy… It has made me realise that I need to keep seeing my therapist every week. There’s no other option.

           

But can I afford it? I’m currently trying to apply for my loans for next year, screaming with frustration because it looks like my parents earn just over the amount required for me to get extra financial help… My financial situation doesn’t seem to count for much. Even though I’ll be 21 this year and I have moved out of their house, I am still apparently dependent on my parents. They help out as much as they can, but to be honest I feel awkward asking them. My father is currently in therapy himself and is having to halve his working hours because of his own depression and my mother is retired. I don’t honestly feel like I can just ask for money as and when I need it.

           

My Disability Allowance doesn’t seem to cover things like therapy. It covered my laptop (definite plus) and my fortnightly (or thereabouts) sessions with my mentor but not much else of use. I guess it’s assumed that if you turn your nose up at the NHS, then you have to fork out for private therapy out of your own pocket. Never mind that the NHS have either ignored me or treated me with disbelief regarding my depression for years… My point is, if my Disability Allowance is willing to provide me with things like ‘textbooks specifically to help with my disability’ (which is what? Self-help books?) and ‘taxi journeys’ (presumably when I don’t feel I can get the bus, but to be honest phoning for a taxi is even more difficult, let alone having to ask for a receipt to photocopy and send off for reimbursement), then why isn’t it possible to gain help with my therapy costs?

           

The reason for the title of this entry is that I’m sure this is a government issue rather than one personal to my uni, but it is infuriating nonetheless. Why should I have to put a price on my own sanity? I’m not saying it is my university’s responsibility to pay for my therapy, but if they’re willing to give money towards other issues regarding disabilities, they’d do better not to make it so complicated for me to gain financial help when I need it.

 

University Challenge: Part Five B

Suggestion To My Uni: Better organisation in the welfare building Pt 2

 

Update from last entry: I received an answer to the questions I wanted to ask Finance Guy and the answer was basically… ‘I don’t know’. Great… He gave me a bunch of other numbers to call and I was finally told by another Support Lady that I’m not entitled to any money to pay my therapy costs. I’m pretty worried about this because I know I have to keep seeing my therapist every week. My mother has suggested I bypass the welfare office and go direct to the people who assessed me for Disability Support in the first place… Watch this space…

 

I have a learning mentor who I see occasionally and because of poor planning, we rarely have a private room to meet up in. Obviously, the welfare building would be the best place to meet in but the few times she was able to book a room for us to use for an hour at a specific time, the following things happened:

 

-    We arrived to find the room already in use and no alternative available.

-         We began using a room, only to be interrupted by the university chaplain who apparently used it at that exact time each week!

-         We had to resort to using someone’s office because of a double-booking, which meant that another person was in the room working while I was talking about my problems.

 

(There’s really nothing worse than trying to talk about personal problems with someone shuffling papers in the background and whispering, ‘Don’t mind me!’ at various intervals…)

 

One morning we had a room booked for 12 o’clock, only to arrive and be told that the entire building was shut until 2 o’clock due to the Easter holidays! I admit this is a problem that at the moment may not have an answer just because Bath Spa’s campus is not very big, but there’s a definite communication problem here. I was asked recently why I haven’t complained yet but my answer was just that I don’t know who to complain to. The admin is so confusing, I have no idea who sorts anything out. Most of the staff have no idea who each other are…  

 

 

University Challenge: Part Five A

Suggestion To My Uni: Better organisation in the welfare building Pt 1

Oh yes. This is a two-parter

 

The welfare office at my uni is a converted building that I think was originally going to be used for halls. As a result, it is cramped, dark and the idea that anyone in a wheelchair could comfortably get around it is pretty hard to believe. I have usually been able to make appointments to talk to someone about my problems which has occasionally been helpful. However, I have also been left in the lurch by staff members who don’t seem to understand how appointment-making works…

 

Last week, I had an appointment to talk to the finance officer regarding the amount of money I am entitled to next year. I’m pretty worried about how I’m going to survive next year with rising rent costs and having to see my £37-a-session therapist every week. I had a panic attack one day, then decided to email the woman I usually talked to at the welfare office. She didn’t suggest meeting, but passed on my desperate, I-don’t-know-what-to-DO-please-help-me email to the finance officer, who apparently was out of the office for another three days. O-K… I replied to her, cc-ing the finance officer, deciding I had to make some sort of link between the woman who listens to my depressed ravings and the Very Serious Money Man or else I wouldn’t be taken seriously. Needless to say, I was feeling a little out of my depth. On the day Finance Guy returned to his office he sent me a short email telling me to phone his office to arrange an appointment. I was a bit confused… Had he even read my very long, snot-dribbling, tear-stained email? Had Welfare Woman told him I hate using the phone? I had to go to work the next day, so I used my coffee break to phone him from my mobile outside the shop. Not ideal, I hate talking to official people, I hate using the phone and I hate using the phone in public but sometimes (as the Official People annoyingly point out) needs must… I gritted my teeth.

 

‘What can I do for you?’ he asked as soon as I got through to him. Again, confusion. He had my email presumably sitting in his inbox right in front of him, detailing exactly what my problem was. I awkwardly explained my worries again, glaring at any passers-by who could hear. We arranged an appointment for two days time (which was then Thursday at 11am). ‘I’ll just pencil you in,’ he said. So, silly me, I assumed he wrote things like this down…

 

Thanks to the massively helpful once-an-hour-in-the-holidays uni busses, I arrived at campus 50 minutes early on the Thursday and passed the time sitting in the library, feeling horribly nervous. The last time I had spoken to this guy, I had burst into tears because I felt so uncomfortable talking about my problems. I have no idea how student finance works, really, and I thought that he, the financial officer, might be able to help a tad. That time, he hadn’t suggested much and had looked suitably ‘Oh-dear-a-crying-girl’ awkward… I looked at the clock and felt sick. Five to eleven. Then I decided I was tired of feeling sick and downtrodden by uni, and did a Wonder Woman turnaround. I decided I was going to pick up all the courage I had, get in that office and demand the help I needed. I wasn’t going to take any shrugged shoulders, any ‘I don’t know what I can do’s. He was paid to do a job, I was paying to be at uni. I had the upper hand! I could do this!

 

I marched into the welfare building and went to his office. The sign on the door said ‘Closed’. ‘He must have forgotten to change it,’ I thought, foolishly. I knocked. No answer. I tried the handle. Locked. A woman walked out of the office next door. 

 

‘Can I help you?’

 

‘I’m looking for Finance Guy,’ I mumbled, Wonder Woman disappearing.

 

She gave me a look like I’d actually said ‘Finance Guy’ and not Finance Guy’s name. ‘He’s at the Open Day all day today.’

 

There was a silence, like she expected me to slap my head and go ‘Of course. The Open Day!’ I didn’t, I just stared at her.

 

‘We had an appointment scheduled for today at 11,’ I said.

 

More silence. Then finally, as she realised I wasn’t going to turn tail and leave, she suggested I go and look for him (!!) and that ‘he might come back here for you, but I don’t know.’ I was incredulous. Do the words ‘scheduled appointment’ not mean anything at all?

 

Feeling like an idiot, I went and looked, but the building she suggested I look for him in was swarming with prospective students and parents and I didn’t feel anywhere near brave enough to set foot inside. (My friend later said I should’ve stormed right in and made a big fuss in front of everyone about how rubbish the university is and made them all go elsewhere!) Eventually, I decided to go back and wait in the welfare building in the small hope that he might come back. At 11:15, my friend walked in and I finally decided he wasn’t coming. We went off to have a Diet Coke and a rant in the canteen.

 

The next day I sent a very restrained email to him expressing confusion. His reply? ‘Sorry, we must have just missed each other’… I honestly didn’t know what to say.

 

 

 

 

University Challenge: Part Four

 Suggestion To My Uni: Have a better student information system.

 

Talking to official people about personal problems is always nerve-wracking, obviously. But what really doesn’t help is if every time I have to go and see a new person at uni about something relating to my mental illness, they have no idea who I am.

           

 A few memorable times:

 

- Having to go and meet with my lecturer in the first year after I was experiencing severe panic attacks and having to run from his class each week. I tried to explain my problems the best I could. He was silent for a while and then nervously explained that he didn’t know very much about depression but when he was at university something similar happened to him. Cue awkward silence.

 

- Discovering I had to give a presentation to the whole class for one of my modules. I panicked and told my teacher I would almost definitely have a panic attack if I was made to do it. She sympathised but told me it wasn’t up to her and I’d have to make an appointment to see another woman. This took a while and in the meantime I worried about failing the class. Eventually we met and I tried to explain to her what my problem was. She gave me the option to do an essay instead but didn’t seem to understand why I couldn’t do the presentation.

 

- Sorting out the deadline extensions for three pieces of work I couldn’t complete on time. I completed the work shortly after the deadline but I wasn’t sure how I was supposed to submit it because no one had told me. I made an appointment to speak to a member of the admin staff who sat in silence as I explained why the work was late and then coldly told me I should have submitted the work to the registry office weeks ago (despite my revised deadline being several months away) and that ‘no one will take it now’. I was told to post the work to a man I’d never heard of in a different department and the woman then went on to insinuate that if I couldn’t get the work done on time then maybe I shouldn’t be on the course at all. Horrible experience.

 

- Having to talk to one of my lecturers this year about why I had a) joined his class late (Answer: Because the university had thoughtfully programmed my timetable so that I was in from nine til five on a Wednesday with no breaks and I was forced to swap classes) and b) why I had been in his class for two weeks without handing in any work yet (Answer: Because I was going through a particularly rough patch and finding it very difficult to keep up with work). I explained my problems again to him but, just like the others, he didn’t seem receptive. He told me that if I couldn’t get the work done, then I shouldn’t be on the course. Fighting back tears, I tried to explain to him how much I wanted this degree and how I knew I could get the work done for the class but I just needed a little more time. Eventually, he seemed to grudgingly accept this and told me I had another week. I went home feeling shaken up and upset. I later thought that it seemed absurd I was having to prove my worth yet again in the second year of my degree. Surely completing a year of university was enough to show that I was entirely capable of doing the work? I gained two distinctions in my first year! Why wasn’t this information available to my lecturer as proof that I wasn’t simply being lazy?

 

These are the main ones that stick out in my mind but there are dozens of examples I could mention. It has not been easy to get people to understand, but the main point is that there is plenty of information about me within the university (my Disability Assessment report, for example) that makes it obvious I am living with a mental health condition. I shouldn’t have to feel like I’m dragging round a filing cabinet about myself every time I talk to someone new! It is important that I mention the few lovely lecturers who were completely understanding when I went to them for help. But there’s a definite emphasis on ‘few’. For the most part, I have had to fight my own battles. I suppose that in order for the information about me personally to be made more available, attitudes towards mental health in general would have to change also.

 

University Challenge: Part Three

Suggestion To My Uni: Make sure all lecturers know the correct way to talk about mental illness. 

Since being at university I have been shocked by the amount of times I have heard uninformed and sometimes even offensive attitudes towards mental illness from members of staff. Although it is discouraging when I hear a group of students my age speaking this way, I can usually forgive them for it and put forward my own opinions so that theirs might be changed. After all, we’re all still young. But professional academics put in place by a university so that their job is to teach? In the last year and a half I have heard dismissive and frivolous comments about bipolarity (quite often manic depression is talked about as if it is funny), blasé attitudes towards depression in young people (‘they’re making it all up for attention’ being a typical standpoint) and, worst of all, a complete misunderstanding of what it is to be a creative person who lives with a mental illness.

           

I am on a creative writing course. I am completely aware that a lot of the great writers and poets that we read today suffered and sometimes died because of their misery and how a lot of depression has inspired some beautiful pieces of writing. Do I respect this? Completely. I can absolutely see how living with an illness of the mind can make you introspective and thus have a better capacity for writing deep and meaningful pieces. I know the merit of being able to create something out of your depression: a lot of my writing is very personal, and often the most personal writing can turn out to be the best. Occupational Therapy works in this way. I completely support it as an idea. However, do I think that the best or even only way to write something meaningful is to be depressed? No. Do I believe that my depression is nothing more than a tool for my writing? Definitely not. Am I happy to live with an illness that robs me of my livelihood and energy just so that I can apparently write better? ABSOLUTELY NOT.

 

I honestly couldn’t believe the attitude of some lecturers who suggested time and time again that being depressed is a blessing, a great gift for introspection. I almost groan out loud now in classes when I know we have to talk about a writer who committed suicide because I know inevitably the discussion will turn to mental illness and most of the time not even one person in the class will know what they’re talking about. And that includes the lecturer. On the days when I feel brave enough to speak up for myself, I am quick to correct any lecturer who begins the usual spiel about depression being the key to great writing but having to do this all the time raises the question about why they don’t know about mental illness in the first place. Surely there are some sort of Equal Opportunities rules that they need to know about before beginning the job? Imagine hearing a lecturer say that people in wheelchairs are lucky for not having to walk around everywhere! There needs to be better information for lecturers about the best way to discuss these things in a classroom situation. Perpetuating the myth that mental illness = creativity makes it very difficult for people like me to get their voices heard. You can imagine the frustration: on a bad day I sit in class and listen to everyone else talk rubbish about the subject I know the most about.

 

University Challenge: Part Two

 Suggestion To My Uni: More help with housing. 

I was uncomfortable with the idea of living in halls. Living with seven other people in cramped and often noisy conditions, having to go to a separate building to do my washing, and quite probably feeling out of sorts for not wanting to be part of the party culture didn’t feel like the right atmosphere to combine with my depression. After I took a tour around the halls on the open day, I panicked and confessed this to my mother.

 

When we went to the housing office, they seemed slightly put-out by my suggesting that their halls were not appropriate for me. It was suggested instead that I go into what they called a ‘scheme house’, a house owned by the university, closer to the centre of Bath with fewer housemates. I thought this sounded ideal, so decided to go for it.

 

I waited months for them to sort this out. Eventually they got back to me in late August (barely a few weeks before I was supposed to start) in the form of an email. The email consisted of the address of the house I was supposed to be moving into and the names and phone numbers of the girls I was going to be living with. That was it. Shortly after this, I received a phone call from one of the girls saying that as I lived the closest to Bath (Bristol) I should be responsible for sorting out a viewing of the house, getting the keys etc.

 

I was already panicking enough about the situation, but being told I was responsible for sorting out the entire house by myself was the last straw. I went into a panic attack that lasted about half a day and my mother angrily rang the housing office at the university to tell them it was not OK for them to assume I would be up to doing this. They hadn’t assigned anyone from the university to be in contact with me during this and the other girls hadn’t been told that I had a problem. In the end, through a lot of negotiating, a viewing of the house was arranged and I went to Bath to see it.

 

In short: it was awful. The house was set out over four floors as it shared the building with a shop. The bedrooms were a good size but for the most part I found the layout of the house uncomfortable. The kitchen was two floors up from the ground floor, the bathroom, three. The room on the bottom floor by the front door was definitely the worst of the lot, hardly any light, with bars on the tiny window, presumably to stop people breaking in. The three other girls were friendly enough but I wasn’t sure how they’d feel about me explaining my condition to them and with no one from the university there to help I felt awkward talking about it. We couldn’t decide how to allocate the rooms so we asked the estate agent to do it for us. I ended up with the room on the bottom floor. I was forced to sign the contract then and there as the other girls wouldn’t have been able to get their keys if I hadn’t and two of them had come from hundreds of miles away. Afterwards, I cried, knowing that this had all been a huge mistake.

 

For the first couple of days I couldn’t sleep through fear of someone breaking in. Every time I saw a shape of someone in the garden at night I panicked, even though it was only a friend of one of the other girls. Every time they had friends over I could hear them all walking past my room and up the stairs clear as anything. The girls gradually grew less friendly towards me as I refused to go out with them, preferring to stay in and read. I tried my best to fit in with them but after some time I realised we were just different people. My depression grew in this time: I felt inadequate and lonely and the position of my bedroom in the house didn’t help. One night I was woken at three am by one of my housemates forgetting her keys. Most mornings I was woken at six am by banging and crashing from the stockroom of the shop we shared the building with which was right above my room. I phoned my parents a lot in this time, which I felt horrible about doing as I had tried so hard to make this a fresh start. My mother was angry that the university had basically abandoned me straight after allocating me the house and hadn’t bothered to check with me that it was suitable. We started negotiations with the housing office and the estate agent to get me out of the contract. It was a long process and we received nothing but hostility from the university who I think believed it was my fault for signing the contract despite the fact I had no choice.

 

Eventually I was released from the contract under mitigating circumstances. I pushed a piece of paper under the door of the house getting the girls to sign a declaration so I could get the deposit back. By this time, the girls were outright hostile to me, having decided that I was cold and unfriendly rather than depressed and didn’t answer the door. To be honest, I don’t blame them too much. It was true that I hadn’t made much of an effort to make friends with them, but it wasn’t anyone’s fault. It was just lousy circumstance and for that I blame the university’s poor planning and non-understanding of my condition.

 

I ended up living with my parents for the whole of my first year. Some new start. To top it all, during my second year I saw the inside of three different halls on campus specially designed for people who live with mental conditions (agoraphobia, bipolar disorder and autism). Clean, bright, airy, spacious. A lot more expensive, obviously, but quite clearly perfect for me! I can understand that universities (especially small universities like Bath Spa) have limited rooms to offer to people with health problems but I find it aggravating that I wasn’t told about these options and insulting that I wasn’t even considered. It could have saved me a lot of problems.

 

Kind of a long one, guys, but thanks for reading. More to come.

 

University Challenge

Getting to uni was not an easy thing for me. Forget UCAS, forget leaving home, forget making new friends, forget planning the rest of my life… Getting to uni was still not an easy thing for me. As a long-term sufferer of depression, I survived three years of being bullied by classmates and ignored by teachers in secondary school, two years working for my GCSEs at a private school run by the NHS for children with mental instabilities, three years at college for A levels (I had to repeat one of my A levels due to being unable to complete the work in time because of depression), completing one of my final exams using one finger on a keyboard because I’d broken my hand punching a wall during a panic attack the week before and finally getting through the panic and horror of deciding about my future to settle with a place at Bath Spa University. And if you think that’s a long sentence, you should see my diary entries. Living with depression has halted me at every turn throughout my education.

 

The support I had received at school and college was at best shaky and at worst non-existent. I have seen every patronising and unhelpful guidance counsellor, every surly and stony-faced medical officer, every teacher who told me to ‘come and see them if I needed any help’… and none of them did. I was told repeatedly that I ‘seemed to be looking for answers no one could give’. I was told to ‘knuckle down and get on with things’ and often that ‘no one else seemed to be having the same problems.’ Despite the confessions of despairing and often suicidal thoughts, panic attacks, vomiting and the onset of my compulsive hair-pulling (which has continued to this day) no one mentioned the word depression. No one was there to tell me that lots of other young people go through the same thing. No one was there to help me feel like less of an oddball when other kids picked on me for being different. Basically, no one was there. If there’s one very strong message I took away from my school education, it’s that There Isn’t Enough Being Done. There needs to be qualified mental health welfare officers in schools and colleges, available at all times for students who need help. There needs to be a better understanding of depression and how it affects young people in full time education. Basically, it needs to be taken a lot more seriously than it is now. I remember all those afternoons where I would stand on the bridge down the road after school and think about hurling myself off because I felt so alone. I was twelve years old. If one teacher had understood and offered help, a lot of the struggles that I went through (and I imagine that a lot of other young people did too) could have been avoided.

 

So getting to university felt like climbing to the top of a mountain. I thought ‘Finally! I can be treated like an adult. I will have people around me who will understand. It’ll be the start of a whole new life.’ And I have started a whole new life. I am now living away from home, working at a degree I care about, and I also have a part-time job. I feel more on top of things than I have ever done in the past. BUT: How much of this do I owe to my university? I’d say… roughly 25%. If I thought that just because I was now an adult, working my way into the wider world, my depression would be treated with more severity, I was bitterly disappointed. Looking back now, I can say I was also pretty naïve. But that’s not to say I don’t have quite a few suggestions to my university that could have cleared up quite a few headaches in the past year and a half. In my next few blog entries, I will be talking about the kind of things I mean.

 

Watch this space…