Why Do I Have Depression? Making My Experiences Worthwhile

I’ve talked about depression a lot on my blog recently. I’ve been very open about my own experiences, but I’m acutely aware that my experiences are individual to me, and on the whole, we don’t completely understand why people experience depression, why they experience it in certain ways, or how we should treat it best. Sometimes it can be really frustrating to live with depression; previously I’ve found myself feeling a bit jealous of people that don’t have this heavy blanket to carry round with them – why do I have these experiences? Why don’t others? If I have kids will they have these experiences too?

Instead of being jealous or frustrated, in recent months I’ve mad a conscious effort to make my own experiences of depression feel worthwhile. Whether that’s been blogging about it, providing online support to people that I’ve never met, talking to people in real life.. it’s been a weirdly nice way to ensure that something good comes out of such difficult experiences.

Now, I’ve decided to take part in a research study.

My entire PhD looked at participant recruitment in research (specifically, clinical trials), so I know that recruitment is hard. That said, I’m not taking part because I don’t want the researchers running the study to stress-cry more than absolutely necessary. I’m taking part in a research study about depression because it makes me feel like I’m contributing to solving the problem. If I have to live with depression, then I may as well use my experiences to help researchers understand it more thoroughly. Maybe my contribution to research will help answer why I have these experiences, why others don’t, and whether any potential children of mine would be at risk of these experiences as well.

So, what’s the study?

Recently, researchers at King’s College London launched the largest ever single study of depression and anxiety. They aim to recruit at least 40,000 people living in the UK that have experienced depression or anxiety at some point in their life. This study, the Genetic Links to Anxiety and Depression (GLAD) study aims to ‘make important strides towards better understanding of these disorders and improving the lives of future patients‘.

If you live in the UK and have experience of depression or anxiety, I would really recommend that you watch the video below, and read on to find out more information about what taking part in the GLAD study involves.

It’s really important that we try to get as many people from as many different backgrounds to take part. When lots of similar people (i.e. people of one ethnicity, people of a limited age group, people of the same gender etc) take part in research, the results are at serious risk of bias – meaning that the results would only be applicable to the group of people that took part in the study. The GLAD study team has explicitly said that they want to recruit from diverse groups that represent the entire UK population, and they are actively working to address the complex barriers that exist for some potential participants by working with mental health organisations that have links to various different communities around the UK.
Clearly, it’s important that everyone with experience of depression or anxiety takes part in this study, but if you do know of any mental health organisations, or community groups that you feel may be difficult to connect with via the methods that the team are already using, please do forward them this blog post or direct them to the study website (www.gladstudy.org.uk) for more information.

How you can take part in the GLAD Study

Step 1: If you have personal experience of depression or anxiety, and live in England, Scotland, Wales or Northern Ireland, head to www.gladstudy.org.uk. Scroll to the bottom of that page and enter your details to sign up.

Step 2: Read the information sheet carefully to ensure that you understand what the study entails, and what will be expected of you if you take part.

Step 3: Go through the consent process, this is a series of 15 yes/no questions, and you’re also asked for your address and NHS number (I didn’t know my NHS number and was still able to go ahead and complete it – I’ll go back and complete my NHS number when I have it later this week).

Step 4: Complete the GLAD study survey. This is quite a long process, but it’s where the bulk of the effort comes in terms of research participation – after this involvement is pretty minimal (but still important) going forward. I think it took me about 30 minutes or so to complete the survey. The survey is split into various categories, the sensitive ones also include an option to skip if you don’t feel comfortable answering them, which I thought was a good way to ensure that the research doesn’t trigger anyone with particular life experiences.

Step 5: A GLAD study saliva kit was sent to me within just a few days of completing my address details in step 3. Open this up and make sure that you have everything listed in this ‘what is in my saliva kit?’ section of the leaflet enclosed.

Step 4: Follow the instructions to fill the saliva sample tube – note, make sure to brush your teeth 30 minutes before giving you sample, and don’t eat or drink anything in that time. You need to fill the tube to the 4ml line, and there will already be 2ml of a DNA stabiliser in there. This may take a few goes; 2ml of saliva is a lot more than I expected, it took me 5 goes to get enough! Pop the lid firmly back on the tube and shake it up.

Step 5: Put everything in the freepost envelope that comes in the kit, and pop it in the post box.

That’s it!

When the study team receive your sample, they will extract DNA from your sample. Samples will then be stored without any of your personal details; if you are from England and Northern Ireland, your sample will be stored at the NationalBiosample Centre (NBC) in Milton Keynes, if you are from Northern Ireland, some of your sample will also be stored in secure facilities at Ulster University in Coleraine, if you are from Scotland, your sample will be stored at NBC and some will also be stored at the Wellcome Trust Clinical Research Facility at the University of Edinburgh, if you are from Wales, your sample will be stored at NBC and some will also be stored at National Centre for Mental Health/MRC Centre for Neuropsychiatric Genetics and Genomicsat Cardiff University.


This post is in no way sponsored or affiliated with the GLAD study. I enrolled in the study as a participant following the steps described above after seeing a post about the study on Twitter. I wrote this post as I want to highlight how quick and simple study participation can be, in an effort to encourage people with experiences of depression or anxiety to take part themselves.
For more information please visit www.gladstudy.org.uk.

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Sources of Support for Those That Are Struggling

This is a weird blog post to write, but I didn’t want the week that I’ve just had to go by without saying anything – it’s too important.

My first day at my new job as Research Fellow was supposed to be Monday 4th March, and I’d planned for this week to be about getting stuck into work, writing lots and getting a feel for the new project that I’ll be working on for the next 2 years. Instead, on Sunday evening my partner and I went to our friend’s flat because we were worried about him. He hadn’t been answering text messages, he wasn’t answering the door to his flat, his phone was going straight to voicemail, and no one had heard anything from him since the early hours of Saturday morning. We got the spare key to his flat from another friend, and let ourselves in. We found him dead.

This week has been one of the most surreal weeks of my life. It still doesn’t feel real, and I’m not sure that it ever will.
The point of me writing this blog post isn’t for sympathy, or messages of support – we’ve had lots of them already, and everyone around us has been understanding, supportive and kind. I feel lucky that we have people around us that we’ve been able to call ‘just because’. Some people don’t have that, or don’t feel that they have that, so I wanted to highlight sources of support that are available to people that need it.

I’m based in the UK so these are UK-centric, but I will try to include links to international organisations too – if you know of any further sources of support, please leave details in the comments below and I will add them into the list below.

Helplines

Mind

Infoline

The Mind team provides information on a range of topics including:

  • types of mental health problems
  • where to get help
  • medication and alternative treatments
  • advocacy.

They will look for details of help and support in your own area (UK).
Lines are open 9am to 6pm, Monday to Friday (except for bank holidays).
0300 123 3393
info@mind.org.uk
Text: 86463

Legal line

The Mind legal team provide legal information and general advice on mental health related law covering:

  • mental health
  • mental capacity
  • community care
  • human rights and discrimination/equality related to mental health issues.

Lines are open 9am to 6pm, Monday to Friday (except for bank holidays).
0300 466 6463
legal@mind.org.uk

Blue Light Infoline

Mind’s Blue Light Infoline is just for emergency service staff, volunteers and their families.
The team provides information on a range of topics including:

  • staying mentally healthy for work
  • types of mental health problem
  • how and where to get help
  • medication and alternative treatments
  • advocacy
  • Post Traumatic Stress Disorder (PTSD)
  • existing emergency service support
  • mental health and the law.

Find out more about the Blue Light Infoline.
Lines are open 9am to 6pm, Monday to Friday (except for bank holidays).
0300 303 5999 (local rates)
bluelightinfo@mind.org.uk
Text: 84999

If you’d rather not speak to someone on the telephone, Mind also offer a web chat service, there is more information here.

Samaritans

Samaritans are open 24 hours a day, 7 days a week.
You can call them on 116 123 or email jo@samaritans.org

Websites

The Mental Health Foundation
Mental Health UK
Mental Health Matters
Mind (charity)
Types of mental health problems
Supporting someone with mental health issues
How to access mental health services

Starting points for international organisations/sources of support

Canada
USA
Australia

Also, another point – the language that we use around mental health and suicide is important. Research has shown that using stigmatising language can deter people from seeking the help that they need.

“Suicide is no longer a crime, and so we should stop saying that people commit suicide. We now live in a world where we seek to understand people who experience suicidal thoughts, behaviours and attempts, and then to treat them with compassion rather than condemn them. Part of this is to use appropriate, non-stigmatising terminology when referring to suicide.”
– Susan Beaton, Suicide Prevention Specialist

With this in mind, Samaritans recommends:

Phrases to use:

  • A suicide
  • Take one’s own life
  • Person at risk of suicide
  • Die by/death by suicide
  • Suicide attempt
  • A completed suicide

Phrases to avoid:

  • Commit suicide
  • Cry for help
  • A ‘successful’ or ‘unsuccessful’
  • Suicide victim
  • Suicide ‘epidemic’, ‘craze’or ‘hot spot’
  • Suicide-prone
  • Suicide ‘tourist’

Science On A Postcard X PhDepression

Another post that’s late in the day for #Blogtober.. today was just a bit hectic and I feel like I’ve been constantly busy since I left my flat at 7.15am. It’s now 10pm and I’ve just finished putting new listings in the Science On A Postcard Etsy shop, so I figured I’d give them their own little blog post.

A few months ago Susanna Harris from PhDepression messaged the Science On A Postcard account on Instagram to talk to me about a potential collaboration. I’ve spoken a lot before about my own struggles with mental health, and I think it was pretty clear to Susanna that I thought that what she was doing with PhDepression was fantastic.

From the PhDepression website:

The PhDepression LLC founder Susanna Harris explains her passion for this project: “When the Nature Biotech article showed nearly 40% of graduate students struggle with anxiety or depression, I felt a sense of belonging. A year before, I was in a deep depression, and this paper made me feel less alone. But I couldn’t name 5, let alone 50, students in my cohort that might be struggling. There was a disparity between the public faces in our universities and the underlying stories.

The PhDepression LLC aims to increase visibility of those who have struggled with mental health issues, from students to postdocs, future PhDs to those who have long-since graduated. Many of us deal with these problems, and we must support our community by breaking the stigma around mental illness. Academia would be a stronger, kinder place if we could talk about these things openly and get the help we need”.

So, what is this wonderous collaborative product that we came up with? Well.. it’s 2 products actually. One is a pin badge, and the other is a set of 5 notecards; all fit the theme of mental health and self care.

‘Self Care Is Not Selfish’ enamel pin badge (Available to buy here for £6)

Funds from the sale of both of these products goes towards keeping PhDepression going – that will likely include costs for the website, potentially travel to help the team spread the PhDepression message through giving talks, whatever they need to help support the project and enable the team to carry on the important work that they are doing.

If you are a graduate student or researcher that’s struggling with your mental health, please go to The PhDepression for help and support – if you would like someone to talk to, or somewhere to go to find out about what sort of help is available to you, these people are offering a completely free network designed simply to help.

‘Thank You/Self Care’ Set of 5 Notecards (Available to buy here for £7.50)

For more information on The PhDepression head here:

thephdepression.com
twitter.com/Ph_D_epression
instagram.com/ph_d_epression

On Talking: Some Thoughts on Mental Health

We are told to talk.
Talking will change things;
Talking will ‘end the stigma‘.

I have talked,
I am still talking,
Talking is not enough.


Today is World Mental Health Day; the day that social media feeds are filled with posts about people’s experience of poor mental health, photographs of anxiety meds and anti-depressants flood Instagram and Twitter in an effort to normalise these experiences and end the stigma.

This happens every year, and it’s not enough.

Talking is good, I agree with that, but we are talking. I talk regularly about my mental health – I’ve posted about what it was like to be diagnosed with depression whilst doing a PhD and that post has been read by hundreds of people, and I’m very open with friends and colleagues about the fact that sometimes my brain just doesn’t work how I want it to. I’ve emailed my supervisors and colleagues asking to reschedule meetings because I just couldn’t think properly that day, I’ve convinced my boyfriend to travel to a conference with me because I felt too anxious to go alone. I’ve been there, and I’ve been brutally open and honest about it. I’m not ashamed, I talk about the fact that without my ‘delicious antidepressants’ I might not have got out of bed that day.

I talked to my Doctor. I paid to talk to a counsellor, that didn’t work for me and it wasn’t sustainable (£40 for a 50 minute session). I waited 18 months until I could talk to a counsellor on the NHS, and she told me to think about losing weight, doing some exercise and eating more healthily (she hadn’t asked how much exercise I was doing or what my diet was like).

Talking is not enough.

Talking may work to ‘end the stigma’, but ending the stigma is not enough.
We need action.

Earlier this year I read an article in The Metro that summed up my thoughts pretty well:

Theresa May said last year, ‘We must get over the stigma’. Okay, lip service paid. But then, as part of the same speech, she says it’s ‘wrong for people to assume that the only answer to these issues is about funding’ and that no more money will be available to develop services. It feels like being told: ‘Sorry pal, we know your leg’s broken. We can’t put a cast on it right now (budget cuts), but just know that we’re working to reduce the stigma against users of crutches. Off you go.’”

On this World Mental Health Day, instead of posting on social media, don’t just like and retweet the posts you see about mental ill health, do something about it.

Ask for change:
Petition – Drastically improve funding for Mental Health Services within the UK
Petition – Fund facilities for people who feel suicidal so they always have somewhere to go
Contact your MP
Work to make your workplace more mentally healthy with this 7-step guide
If you are able to, donate to local organisations that are working to keep mental health services and support in place in your community Mental Health Foundation, Mind, Scottish Association for Mental Health, Support in Mind Scotland.

If you are in the UK and you need access to mental health help and support services, please take a look here.