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OCD and how it is not funny if you really have it

OCD, I know I have talked about this before in other posts, but it recently became clear that I need to discuss it again and this time from another angle.

Yet another post about OCD on Facebook came up the other week.  ‘These three targets all look the same to people without OCD, click the link to find out how OCD you are’, or something along those lines.  I have OCD and the targets still looked all the same to me.  I commented on my friends post that this was the case and that I thought posts along these lines stereotype and trivialise my condition.  Another friend accused me of trying to start an argument when it was only a game.

I have seen too many posts along these lines about OCD being a perfectionist neat freak thing that can be judged by silly games.  I see memes and jokes posted around social media quite often that are starting to make it seem like OCD is some kind of joke condition.

OCD is now used as a phrase to describe neatness or fussiness. People often say ‘oh I am a little bit OCD’ but, as Connor Heapy wrote in the Independent newspaper ‘Obsessive-compulsive disorder (OCD) is a debilitating condition characterized by unwanted intrusive thoughts and repetitive behaviors or mental acts. Although OCD is often associated with cleanliness and orderliness, it can manifest in a variety of ways. Some spend hours each day worrying about whether they have committed a paedophilic act while others are plagued by the thought that they may have caught HIV from their toothbrush, towel or phone’.  For me during a bad phase OCD can be a disability, stopping me from living my life a fully as I would like.

It is exhausting both mental and physically.  I get up and down over and over to get comfy sometimes and fiddle with my clothing or cushions or hair till I feel things are ‘just right’.  I have to listen to my own head nag me all day on my worst days.  I have had full on arguments with family members over OCD issues, and even argued with myself and the world around me at times.  I have been known to yell at inanimate objects at times.  It just spills out and I cannot help it.  You can learn to manage OCD up to a point, but it never fully goes away.  There is no full rest-bite from it.

For me OCD is about a feeling.  Getting things ‘just right’ does not always mean things have to be perfectly symmetrical or straight, sometimes I do not mind mess, but in my flat it is an organised mess.  My OCD also gets mixed up with my autism, so it is complicated.  OCD is not as simplistic as a lot of these social media posts make out.  My own head is full of mess so I like to be able to order and control the mess outside my head.

I never post jokes, memes or silly games on disabilities online and I ask other people to do the same.  Please respect my right not to have my disability made into a joke.  I can be a fun person and enjoy a laugh, but not at the expense of those already suffering.

downloadGawd, well I cannot tell any difference and I have OCD.

i-have-cdo  A very common meme I keep seeing

Communication

I communicate a lot with my family and friends electronically using text messages, social media and email. I know a lot of people communicate this way now, but it has been brought to my attention that I may do this more than most people my age. This post looks at why I like to use electronic communication so much.

hands-holding-mobile-devices-human-set-phones-electronic-communication-concept-vector-illustration-41976985

Practicality

My relatives live spread out across the country in many different counties. I also have friends that live a long way from me that I met at university. I find the internet a fantastic way to stay in touch with people at a distance. I send letters and cards by post, more than a lot of people do these days, but post takes time and often I want a much quicker response. Also the cost of postal services seems to be getting more and more expensive.

Staying in Touch

I would of lost contact with a lot of people if it was not for Facebook. This includes friends from university, people I met at various events and distant relatives. I have never had many friends and would like to keep the ones I have got. I also managed to get back in touch with a few friends from school that I had previously not spoken with in many years.

Generational

From about my age group and below it just seems to be the natural way people communicate. Although some do so less than others, it is common to use Facebook messenger to stay in touch with friends and even family. Text messaging seems to be becoming normal for people of all age groups now including my parents generation. I am a little bit too old to have had a mobile phone or the internet as a small child, but since I was about fourteen I have regularly used the internet to chat with friends. I got my first mobile phone when I was about sixteen when I decided it would be practical since I was at college and that is what everyone else was using. A lot of my university friends are three or four years younger than me and some of them seem to use electronic communications as much as I do. They grew up with it from a younger age so it is what they are used to. At university I actually would have missed out on things if I was not on Facebook. We would invite each other to parties and nights out using Facebook as it was a great way to invite a lot of people at once. We would use Facebook messenger to group chat as it was very handy for us as drama students to share ideas or work out rehearsal times for our practicals.

Autism Friendly

My autism sometimes makes face to face chat harder for me than it might be for some people. I struggle with eye contact; even my diagnostic report says that I do. When I talk I tend to get carried away and say too much or the wrong thing. When I have to write down what I want to say first either online or in a text message it means I can look back at it and have time to think about what I am saying. It means I am less likely to say the wrong thing and can cut out the waffle, get to the point better. It is common for autistic people to use the internet to chat; it has less social skills to learn, although there are some social rules and I by no means always get them right online. I do enjoy face to face chat, but it can be more tiring for me sometimes and often requires more effort, although this depends who I am talking to and on the situation. Face to face people use non-verbal communication such as body language which can be tricky for autistics to pick up on. There is less hidden meaning in written text chat. I feel like I am more in control with this way of chatting. I do not have to talk to someone when I am not in the mood. If I am having a bad day mentally I can chose to ignore a text message or email and deal with it later when I am more able to. This way I do not upset people and take my bad moods out on them. I do use the phone, but have never been totally comfortable with it. Once I start chatting on the phone I often relax and am fine, but the initial thought of it sometimes makes me anxious. So text messaging is often easier for me. (Although I am getting better with making phone calls and do makes calls when I need to.) Another thing I like about written communication is the more definite response rather than ‘hmm’ or a nod of the head that I can often misunderstand. Even an OK or emoticon is at least a response that shows they took on board what I was saying. I find there is less pressure and less hassle with this way of communicating.

Can Just Say It

I like how I can say what I need to whilst I think of it with electronic communication. If I am not sure if someone is free to chat at the time I can still text or email for them to read later before I forget what I was going to say. Plus sometimes I have to say stuff as I get anxious if I do not. I worry if I do not say certain things as soon as I can to people. I do not mind if people read it later as long as I know it is out there.

Writing is my Skill

Writing is something I am quite good at and I feel confident at it. When talking in person it sometimes gets misunderstood. When I write I seem better at putting at my point across.

How Others Want to Communicate

It often seems to be how others want to communicate with me. Maybe they find it easier as I can bore people with my over talking in person. Also I have no land line phone and calling a mobile phone can be costly so maybe texting or emailing is just cheaper for people. I have relatives who email me rather than phone. I think this could be as they do not know when I am free to talk and do not want to disturb me if busy. I Facebook with some relatives responding to statues and comments as it seems a good way to communicate with each other when we do not actually know each other very well in person. This way I am getting to know them without so much pressure. I text with some family since they are often busy and they do not have time to see me face to face or phone very often.

This way of communicating does come with its own problems. When I do not want to talk I can chose not to, but in turn others can do the same to me. If people ignore me for short periods I am fine, but if it goes on for long periods it can worry me. The trouble is these days people are often expected to be instantly available 24 hours a day when it is not always possible. Another problem is of course when technology lets us down. What with lack of phone signal or devices breaking down or running out of charge sometimes old fashioned post or face to face is just easier.

I do not mind which way people choose to communicate with me, be it face to face or electronically. It is just nice when people want to chat with me.

I Love the Internet

I love the internet, personally I think this invention saved my life or at least saved my sanity to some extent. Some people might say I spend too long online staring at a screen, but it is where I feel most comfortable and can be the real me. It is thanks to the internet I gained more confidence in myself, having met others who also think and feel like I do. There are some websites I find particularly useful and use daily to help me cope with the stress of day to day life. There are also websites that I find helpful when needing advice on certain issues or doing research on a topic. These are some of the best websites I have found to help me with my issues and I hope maybe able to help some of you.

WWW.MIND.ORG.UK   images

Mind are a UK based mental health charity. They do a lot of good work offline too, but sadly not that near where I live, however the website has been helpful over the years for me. It is packed for of information and advice. I like the guides to types of mental health problems. You can look up mental health issues alphabetically for specific named illnesses or you can look up more general guides to various things. They give a thorough guide to each mental illness, in a very reader friendly way. They offer advice to both those with mental health issues and to those trying to support someone who is ill. The website has an interesting news section on the latest mental health issues. The site tells you about Minds latest campaigns on mental health issues and how you can support them. There is a guide to mental health in the work place with things for both employers and employees.

WWW.elefriends.org.uk  elefriends

Mind also have an online support group. A bit like a message board forum, Elefriends is a place I go when I feel I have no one else I can talk to and share my problems with. Like a Facebook status update, but without my family and friends on Facebook reading it. We can say whatever is worrying us, stressing us out or making our mental health worse. Everyone on the site has some experience of having mental health problems and can respond to your message. People can click ‘like’ if it is a positive message, ‘thinking of you’ if it sounds stressful and upsetting or ‘I hear you’ if you have also been in a similar situation and understand how they feel. People can also write a small message in return if they wish offering support or advice. Peer support for me is very helpful as these people have actually been in similar situations as me sometimes and can offer real life advice and not just some text book answer. Knowing that other people agree that my situation is upsetting makes me feel more justified in being upset. The site lets you make a small profile explaining more about yourself and your illness and you are given the option to add a photo should you wish. You can also private message other members. The site is run by Ele the Elephant who pops in now and then to keep an eye on things and monitor posts which is reassuring. Every couple of days or so Ele also leaves a message with advice or links to other things that may help.

WWW.7cupsoftea.com    elefriends

7 Cups of Tea is another online support group for those with mental health problems, but instead of being a message board, you can talk directly to other people either one on one or in chat rooms. The site has a number of chat rooms for various issues such as anxiety, depression, disability, LGBT and relationship support. I find the chat rooms very helpful as I can talk to others who understand some of what I am going though and I get an immediate response. I tend not to use the one on one chat as they have this set up as listeners who are people supposed to be neutral who listen to your problems and respond in a helpful way, but anyone seems to be able to become a listener and I am not sure I like the idea of talking to someone about my personal problems alone when they are not qualified in counselling or something. I like the idea of a group chat as you get more than one opinion on things and a range of support. The site also offers a few simple mindfulness exercises you can listen to when stressed and some self-help guides on various topics. It also has this slightly gimmicky growth path thing, where you build up your path each day the more you seek support from the site. I think the idea is that you build a support path a little each day in the time it would take to sit down and have a cup of tea.

WWW.benefitsandwork.co.uk   elefriends

Benefits and Work are an independent source for advice when claiming benefits. It aims to help disabled and sick people claim the benefits they are entitled to. The site has thorough guides to claiming employment and support allowance, personal independence payment and disability living allowance, plus a bit of information on a few other benefits as well. Not only do the guides tell you how to claim the benefits, but about medicals, how to appeal should you be turned down and any other information you may find useful as a claimant. The site also has the latest news on anything benefit related that may affect claimants. A lot of the information is free, although to access even more detailed guides you can sign up as a paying member.

WWW.nhs.uk/conditions

A handy guide to many common conditions and symptoms. You can look up an illness or disability in alphabetical order. It gives you a good introduction to what the condition is, symptoms, possible causes and treatments. You can also look things up via the symptoms checker which uses a human body to look up various body parts and typical problems that can occur to that part of the body. I often find it useful to confirm what I already suspected I may have or to check if I need to see a doctor about it.

Sometimes I find it best to just pick the various aspects of a website that are right for you, some pages on a site may be very helpful, whilst others may not fit your situation. I also think that using more than one site can be helpful to gain a range of ideas and opinions on something.

If you can think of other websites that you find helpful please feel free to share them here in the comments.

The Disabled and Other People

I am an avid user of Facebook, I have found it a great way to connect with other disabled people who have similar disabilities to mine.  I am a member of several groups and pages for various disability issues.  I find that it helps to have a place to share our thoughts and issues regarding our conditions.  Often we ask each other questions that only others in the same kind of situation will understand  or be able to answer.  It can be very handy for example to ask a group of people who have already had the same surgery you are about to undergo what things we might need to consider taking with us to the hospital or to have ready at home for afterwards.

Whilst I am on these groups I see a fair number of posts about the way disabled people are treated by others.  Some posts are just people using the group as a place to vent and then move on from the situation.  Some people are trying to raise awareness and see if it has happened to anyone else.  Sometimes we even come up with ideas to help deal with some situations.  I decided to try to find out what annoys the disabled most about other people’s attitudes towards them.  Then I hope we can help raise awareness of these things and show the public how we would in fact like to be treated.  The results were interesting and varied.

Question: When it comes to being disabled in any way, what annoys you most about other people’s attitude to you or your disability?

  • They think that if you don’t look disabled or ill then you must be faking it.

You can’t always see signs of disability in a disabled person.  I had a bad hip and sometimes I used a walking stick and then people knew I had mobility issues, but during periods when I did not need the stick people would often not believe me about my hip hurting or not being able to walk very far.  Someone asked me once if I fake it for attention and some people seem to think you would fake it to get a disabled parking badge or benefits.  These people are very annoying.

  • When they pass judgement on you without bothering  to check for facts.  Like parking in a handicap space and having people giving you filthy looks because you are not old or decrepit, so you obviously have no need of the space, regardless of the fact you can’t walk far!

There seems to be a certain type of older person who think that just being older gives them more rights to things than the rest of us.  The ‘I’ve worked hard all my life and paid my taxes, so I deserve this hand out’ brigade.  Being old does not automatically mean you can have a disabled parking badge or certain benefits.  If you can not walk far without severe pain regardless of age you can claim a blue badge.

  • When someone takes something out of my hands and says they’ll do it for you.  If I wanted help I am capable of asking.

Just because a person has mobility issues does not mean their arms and hands do not work.  A person who has a missing arm can still use the other arm and their legs.  It is kind of insulting to have people automatically assume you can’t do something as if you must be brain dead as well as unable to walk or whatever it is.

  • It’s annoying when people say they understand as they had a sore leg the other day.  Not really the same scale of pain.

When I explain my hip issue to some people they say how they once broke their leg and know what I mean.  A broken leg can heal, a hip that grows undersized and deformed and has not regrown by adulthood into the right shape will never mend.  They did not end up needing a whole new body part like I did.  The pain before my replacement was every single day only varying from painfully sore, but I can walk, to so painful I can not move.  Unless you have had chronic pain you have no idea what it is like knowing that the pain is not going to end any time soon.

  • Patronised, being told I am brave.  (I am not brave, I am just living my life like everyone else, no one has a pain or stress free life.)  Or worse, ‘It must be nice for you to get out’.

If you are born disabled you have only ever lived that way so it is not brave it is just living.  If you have an accident is it brave to want to carry on living?  No, it is a natural human instinct to carry on living.  As for being nice to get out, well depends, maybe it was not nice to get out as you were feeling lazy that day or tired or hate the place you are going, just like everyone else.

  • Once you need to use a wheelchair you become invisible.

People start talking to your carer rather than you or fail to even notice you are there.

  • Ignoring me when in town with hubby.  Then asking him how is Debbie doing.  Hello, I’m here ask me.

Unless the disability specificity affects the voice, most disabled people can speak perfectly well and in fully formed sentences too!

  • People moving or pushing my chair without asking.  You don’t grab an able-bodied person and move them, why do that to me?

‘I am just going to move you over here out of the way’ says the woman in the cafe to my friend in her chair.  Err maybe she does not want to sit right in the corner pushed up against the wall.  If she was in the way of the queue or another table, if the woman had asked her politely if she would not mind moving and explained the situation I am sure she would have moved as she is sensible and kind like that.  That way she could pick her own spot to move into and keep her dignity.  If a chair has self-propelling big wheels, there is usually a reason, as they are perfectly capable of moving themselves.

  • That I can’t be a single mum and disabled.

Alison Lapper the disabled artist is a good example of how you can be both a single mum and disabled.  She is clearly a wonderful mother to her son, despite having no arms and truncated legs, as shown on the BBC’s Child of Our Time.

  • Because of bad media coverage on benefit cheats the constant need to justify my disability to strangers and authorities.

Having to constantly prove that you are disabled enough to warrant your disability benefits or disabled parking badge can get very wearing.  A person does not get given these things very easily, it takes considerable effort and time to get benefits, sometimes having to go to medical assessments miles from home.  A very few people do somehow manage to cheat the system, but the other 99% of people on disability benefit are genuine.  These few people are very annoying as they make the genuinely disabled or sick look bad and the fact that the press make a huge deal out of benefit cheats does not help.

  • Being told I can’t be in that much pain as you are smiling.

When in loads of pain every single day you try to find ways to distract yourself from the pain and the fact that you are smiling for all of ten seconds does not mean the pain has gone away, it means you just for a few seconds managed to not think about it quite so much.  Also some smiles might be fake to please other people in a certain situation, but inside the person still feels lousy.

  • When people say well done to us for doing everyday things.

Wow I managed to read a book that won the Man Booker prize and was considered a reasonably hard read!  Could the classroom support worker have been any more patronising at college?  I love to read and have done from a young age.  Having a learning disability does not necessarily mean I can not read and write.  Unless you know the disabled person has managed to do something they have been struggling with for a very long time, it is best not to praise them like you might a dog or a small child.

  • As a job seeker the law says not to discriminate however I get the impression that potential employers see me as a liability.

You can’t prove the employer did not hire you due to your disability, they will come up with some other reason if questioned, but sometimes it is obvious what they are really thinking.  They ask you how you would manage certain tasks and start to question your health during the interview.

  • When someone says ‘well you look OK to me, stop making a fuss’.

Most disabled people only make a fuss when they feel they are not getting fair treatment or really, really need help with something.  Most of us are not attention seeking.  As stated before not all disability or illness is obviously visible.

  • I have been turned away on public transport as buggies are using the disabled spaces.  One bus driver refused to lower the ramp as he could not be bothered.

A child can be more easily lifted out of a buggy than a full-grown disabled adult from a wheelchair.  By law buses have to provide disabled spaces and they can only let the space be used by buggies if there are no disabled people wanting to use them.  Parents who refuse to fold the buggy and make space are just down right rude.  Not lowering the ramp is denying a disabled person access to services which is illegal.

  • No disabled toilets in eating establishments and those with steps to them.

How little brain power do you have to make a disabled toilet with a step up to it?!  Well I have seen this done more than once, idiots.  Restaurants and cafes that seat over a certain number of people have to have toilets and they have to make reasonable adjustments so that disabled people have access to a toilet.  If they do not have disabled toilets they could be breaking the law.  What also annoys me is disabled toilets being used for storage or blocked so you can not use them.

  • It’s the tuts that get to me more than anything.

Tuts as if a disabled person should not be there and should be hidden away out of sight, how old-fashioned is that view!  Or the tut that says this is typical of a disabled person, making a fuss, when all they want is the same access to something as everyone else.

  • I remember someone telling me I was lucky to have a mobility scooter as it meant I did not have to walk anywhere.

I doubt the person chose not to be able to walk far.  I also bet they had to pay for the scooter themselves, and I do not call having to fork out hundreds or thousands of pounds just to be able to cope with a trip to town lucky.

  • People who say you are too young for a total hip replacement.

How do they know, have they had any medical training?  If a surgeon has agreed to the operation I can’t be too young, it is kind of obvious.

The answers of-course relate to the groups the question was asked in.  The group with the largest number of responses was Want my space? Take my disability!   The group campaign against the misuse of disabled parking spaces and blue badges for the disabled.  So quite a few of their answers related to parking and transport issues.

I also got a fair number of responses from Perthes Disease in Adults, a page I run myself.  This page relates to the hip condition I had as a child and is about what happens later in life when we grow up, but still have hip pain.  So the answers from them were often mobility and hip surgery related.  I also asked the question on my own wall as I have a few disabled friends and got a couple of responses.