Social Media, ‘Spoonies’ and Speaking Out

Social media changed my life.

This is no exaggeration. There’s no other way to put it. Social media changed my life.

Most of us are well-acquainted with social media and all its forms. Many of us have a Facebook account, where according to the statistics provided by Facebook itself, there are 1.65 billion monthly users with an active Facebook profile (Facebook Newsroom, 2016). Twitter, though smaller, also has impressive user figures, with an average of 310 million active monthly users, and 1 billion unique visits monthly to sites with embedded Tweets (Twitter Company site, 2016). These figures pertaining to social media users are impressive, and are only set to grow as the number and variety of social media platforms increases. I know Facebook and Twitter often draw bad press with regards to ‘trolling’ or cyber-bullying incidents, but I want to share with you my positive experiences using social media, and why I think they really can be a force for good.

I got into Twitter when one of my friends set up my first ever twitter account. I was reluctant initially, but decided I had nothing to lose and so got stuck right in. Twitter seems to polarise its users: most people I know either love it or hate it, but after nearly six years of using that initial account, I can assure you I fall into the former camp, rather than the latter. Twitter – if you don’t already know – is described as a way to connect to others via ‘announcements’ of no more than 140 characters, called tweets, which can also include photos or short video clips. Registered users can create AND read tweets, whereas unregistered users can only read tweets and not create their own, or ‘like’, ‘retweet’ or send direct messages to others on the platform. Tweets are short, snappy and to the point, unlike Facebook statuses, which can be pretty long and lengthy in comparison. Facebook in comparison is great for reconnecting with long-lost friends and family members worldwide, and can be a fabulous place to store all your treasured photos. I also love using the Facebook messenger app, and I am part of several groups where we chat and connect over common interests. Both platforms provide a slightly different social media experience, and though some people have experienced the downside of social media, it has been such an incredible eye opener for me.

Social media is a great tool for connecting communities, and one I’ve become really involved with is the ‘spoonie’ community. ‘Spoonie’ is a term coined by Christine Miserando, based on the Spoon Theory, which you can read about here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ . The spoon theory is a way to help explain the daily difficulties living with chronic illness, invisible illness and disabilities, and when I first stumbled upon this term everything started to fall into place. You see, I have cerebral palsy, but for a long time I didn’t want to admit to it. I didn’t understand it, and I felt ashamed and embarrassed of these differences. It was only through looking into the spoon theory and the community of ‘spoonies’ that connect as a result of this that I finally found the courage to come to terms with my diagnosis. I found like-minded people through the #spoonie hashtag, I got to learn more about my condition of spastic hemiparesis and its associated diagnoses, and after years of lack of education about my disabilities, things finally began to fall into place. My ‘spoonie’ experience culminated in meeting up with several of my wonderful twitter friends with hemiplegic cerebral palsy themselves, and I finally felt like I wasn’t alone. There were people who cared about my welfare. There were people who understood my frustration and felt my pain. And I just knew I’d made connections that would last my lifetime.

I feel that some people worry about speaking out and being honest on social media for fear of ridicule. I actually expected to receive a level of scrutiny when it comes to disclosing diagnoses and potentially sensitive information, and almost prepared myself for it. Though I was initially okay with sharing information about my physical disabilities – notably cerebral palsy and scheuermann’s kyphosis – I wasn’t always so sure about disclosing my mental health issues. But there came that ‘lightbulb moment’ when I found that sharing this information wasn’t so bad after all. There was a similar community here; where people with mental health conditions felt connected, understood and that they were being taken seriously by their peers. And then I thought ‘why should I be hiding this aspect of myself? Why should I feel ashamed about conditions I have no control over?’ and I decided to speak up. I decided to be honest; not only with others, but with myself. Being transparent about issues I’d sat on and ruminated over for year felt incredibly refreshing, and genuinely cathartic. I finally felt like I was coming to terms with all my diagnoses, and I’d be lying if I said social media wasn’t integral to that.

In an age where disabled people – and disabled women – are finding themselves under ever-increasing scrutiny, it is my firm belief that we must speak up. Though there have been advancements made with regards to liberatory and emancipatory movements during the twentieth and twenty first centuries, we have a long, long way to go. I myself have been the target of ‘ableist’ abuse, further perpetuated by damaging stereotypes seen splashed across tabloids and inflammatory articles online. We have not reached a stage where disabled people can feel comfortable despite their diversity. Many people are accused of fraudulently claiming benefits, or exaggerating the nature of their conditions for apparent personal gain. It is a constant uphill battle for disabled people to thrive in such restrictive environments, but portraying an authentic experience of what it is to be disabled in twenty-first century western society is one way to seriously combat these issues. I want to continue to grow older knowing that social perceptions are changing, and that I can feel comfortable in my own skin, with my own differences and my own talents and skills to bring to the table. The disabled minority is the biggest minority group globally, and yet we seem to fall so far behind in supporting this group. In a world where more people are exceeding life expectancy and where medical advances greatly improve our quality of life, we need to act now and shape a society where disabled people are unafraid to speak out. And I truly believe social media has a big part to play in all of this.

Social media changed my life. It might just change yours for the better, too.

PS: I have just started publishing posts on My Trending Stories found here, so why not check it out? Don’t worry, I’ll still be posting here, too. Hope you’re having a great day,
Heather x

Sources:

http://www.butyoudontlooksick.com/ (2016)

https://newsroom.fb.com/company-info/ (2016)

https://about.twitter.com/company (2016)

Advertisements

Happiness is…

Lengthy chatty phone calls, meeting new people, freshly brewed tea, making plans, hushed tones echoing through the library, making progress, job opportunities, feeling confident 

CBT, OCD and Coming Clean

It’s been a good few weeks since I started CBT, and thought now would be the right time to share my experiences with you so far.
Since my mental health conditions are ongoing, I’ve had multiple assessments and this isn’t the first time I’ve had ‘talking therapy’ in order to help alleviate the symptoms of my anxiety and depression. When I initially presented with mental health problems, we decided counselling would be the best thing. Counselling is more about talking through the issues that are bothering you; CBT is working out how to change your behaviours and learning how to better rationalise your thoughts by searching for ‘evidence’, rather than clinging onto assumptions. Though I actually really benefited from counselling, it was the right thing for the time. I hadn’t explained my deepest, darkest fears before; I hadn’t confided in someone and told them all about my secrets and how I felt about myself and so on. And for that time, counselling was great. It gave me a voice, and provided that undivided attention I needed to address these issues and tackle my mental health head-on. Now I’m at a different stage in my life, and I didn’t feel talking about everything again would be beneficial right now.
This is where CBT comes in. The NHS defines CBT – or cognitive behavioural therapy – as ‘a talking therapy that can help you manage your problems by changing the way you think and behave’, and is particularly useful for ‘anxiety and depression, but can be useful for other mental and physical health problems,’ (NHS, 2014). Rather than just discussing your thoughts, emotions and resulting behaviours, you are actively developing coping strategies and methods to manage your behaviours, which are often unhelpful and perhaps increase feelings of anxiety/depression.
It’s quite a long-winded explanation, so I’ll try and illustrate with an example from my sessions:
Situation : Seeing deadline date in diary
creates
Thoughts and Images: of a bad mark, disappointing others, feeling unworthy and useless
These thoughts and images then produce
Emotions and Physical Sensations: ‘nervous tummy’, palpitations, impending sense of doom and anxiety.
as a result of these emotional and physical sensations, my behaviour changes:
Behaviours/What I did: withdraw, ruminate, ask for reassurance, plan rather than do, hide away from impending situation.
These behaviours then reinforce my Thoughts and images, and so the cycle perpetuates and continues. The idea here is to address the behaviour; it is very difficult to stop the thoughts, but I can stop behaving in an unnecessary and unhelpful way. So, rather than withdraw, perhaps I should focus on what I have done. Changing this focus involves taking into account my good marks, keeping an activity diary to show myself what I have achieved despite how I’m feeling. I know this sounds so simple, but I often get too blinded by my anxiety and depression that I forget what I have done. It helps me immensely to keep track of this.
If you’ve had dealings with anxiety, depression or similar conditions, you’ll know how troublesome assumptions can be. And when I’m at my worst, when the irrational thoughts pop into my mind, it’s so hard to get rid of them. My therapist is keen on getting me to realise that my assumptions – eg ‘people think I’m stupid – are just that; assumed, with no real evidence. Assumptions are largely negative, and don’t help anything, so I’m working on undoing that negative thought process and replacing it with something useful, instead.
Another thing we’ve identified during my sessions is the fact I have OCD -obsessive, compulsive disorder – and have been engaging in classic ‘OCD’ behaviours, including repeatedly checking. This was a bit of a revelation for me. Admittedly, I did wonder whether the checking I’ve been doing was normal, but I didn’t realise it was OCD. I tend to become fixated with checking various things, including checking locks on doors, both in my own place and when using bathrooms on campus, and sometimes this checking can go on for minutes. On a particularly bad day, I’ll go to check multiple times an hour, or wake up and check because I’m so anxious about whatever it is I’m checking. I also like to have certain items arranged in a certain way; the hangers on my clothes rails are often rearranged every night for fear of ‘ruined’ clothes. I am always worried about things breaking because I didn’t put them away properly, so jewellery is often checked and put back, and my alarms set, reset, checked, set, reset, checked…you get the idea. It’s strange. Thing is, I know these things aren’t actually useful, but at the time, checking things is the only way to rid myself of the anxiety. It’s complex, because the more you check, the more you find it difficult to not check. My therapist described these behaviours as coping strategies, as they help me to feel like I’ve regained control, even if it’s just momentarily. And even though I know my door locks as soon as you close it, it just isn’t enough. It’s like my irrational thoughts, and my unhelpful assumptions; I know it isn’t really helpful, but in that moment, and at that time, that’s all I can do to alleviate my worry.
Undoing these things will take time, and will have to be done step-by-step, but for now I’m feeling positive, and I’m hoping to get the most out of my sessions. I have another on Tuesday, and hopefully my progress will continue.
It feels good to be sharing my progress with you. This is a good way for me to see how far I’ve come, and hopefully I’ll be able to look back at these posts and feel proud. I haven’t always been upfront about things, particularly the OCD, and it’s time to just accept it and learn how to deal with it. Mostly I’m sorry that I hadn’t told Drew, or at least not enough. Hopefully I’ve rectified that.
It’s fairly stressful over this way, but as always, I’ll find a way.
Hope you’re doing well and look after yourself.
Heather x
ps: here is the link to the NHS page regarding CBT if it’s of any use:nhs.uk/Conditions/Cognitive-behavioural-therapy/Pages/Introduction.aspx

Happiness is

Guinea pig hiccups, working in the summer sun, passersby saying hello, sunglasses and lipstick, shorts and skirts and linen shirts, making plans, dandelion seeds floating away on the breeze

Happiness is

the sun shining on my face, the bright bluebells in the garden, the sun shining through the trees, the veins on a leaf, distant laughter, delicate daisy petals, cats when they stretch and lounge in the sun, cherry blossom confetti,the sizzle in the pan, the first sip of wine.

CBT and working through

Just thought I’d provide a quick update re: counselling etc. Ages ago (when I first presented with MH problems) I probably mentioned having to have an initial assessment to see what things would be most useful. This time around was no different, and almost the entire session comprised of filling out scales to determine levels of anxiety/depression.

I have a lot of difficulty with these scales as I find it so difficult to assign emotions a numerical figure, but they are aiming to assess the degree to which said mental health problems affect your life. I suppose it’s very difficult to assess anyway, and I know scales are one of the only feasible options, but they’re so difficult to navigate. Scales exist in a similar fashion for pain management, and that’s perhaps why I find them so frustrating. I’m always filling them out, and I don’t always understand what they mean/how useful they are.

After filling out these scales, we had a quick chat about my mental health history. These chats are often the most difficult part of assessments; they take you right back to a time you’d rather forget. I always find it difficult to control myself when I talk about things from the past. I know it’s useful to address, but it never gets easier. It’s hard to admit that at one time I had difficulty leaving my room to use the bathroom, never mind leaving the house at all. Though I can appreciate how far I’ve come, it’s never easy to admit that I’ve really, really struggled in the past.

It’s completely my own complex, and I’m aware of that. It just hurts everytime to even think about it.

By the end of the assessment we’d decided CBT would be the best route. I’ve tried counselling, and at the time I had counselling it was extremely useful because I felt I just needed to talk and uncover all my deepest fears. Now that’s done, I don’t feel like it would be of any use. I need to learn how to control these feelings and physical symptoms, and CBT is the best fit for that.

We briefly talked about cycles of thoughts and resulting behaviours, and CBT will hopefully provide the techniques needed to break the cycles and work through the feelings as and when they occur. Thoughts will probably always pop into my mind, and I will always probably feel anxious about some things, but CBT works towards getting that to a manageable level. Recognising the physiological symptoms of anxiety is the first step, and hopefully I’ll be able to work through something to make things easier on bad days.

My first ‘proper’ CBT session starts next week, and I’ll keep you updated on my progress.

I hope you’re enjoying your day so far. It’s gorgeously bright and sunny over here, and I’m waiting for my coffee to cool before taking the first sip.

Mornings like these bring a smile to my face.

Look after yourself,
Heather x