Wednesday, 19 February 2020

Please Invite Me Out With You

By Amy Cullis

Ever since I started to become mentally ill, I have noticed a distinct drop in the amount of times I have been invited out by friends. I have even lost friends because of the effects of my illnesses.

Many of the times I’ve been invited out, I know I’ve cancelled and this probably leads to someone wondering if I really do want to meet up with them. The truth is, I do though. I really truly do.

I have Generalised Anxiety Disorder, Depression, Borderline Personality Disorder, Post Traumatic Stress Disorder and Obsessive Compulsive Disorder. It’s hard to believe that one person can accumulate so many mental illnesses, but it is possible. Each of these illnesses affect my functioning in one way or another, and pretty much all of them can affect my ability to get out of the house and meet up with people.

My Anxiety and OCD make me worry about humiliating myself in public. I fear losing control of my bladder through not being able to get to a toilet in time. I have to complete rituals and even control the things I’m thinking otherwise I convince myself I will lose control and not be able to cope with the shame. My OCD in particular isn’t as bad these days, but in the past I have had to cancel plans last minute, or I’ve been late because I had to repeat my rituals. It takes a lot to quieten the intrusive thoughts I have around this. It also takes a lot to cut down my counting and repeating rituals. Part of me knows that logically the rituals mustn’t really affect how well I can control my bladder, but those toxic doubts of “what if?” hold me back and make me repeat them, just in case they do have an effect. The times when I’ve not been able to control my bladder, or I’ve almost not been able to, my brain puts down to not doing my rituals properly or enough. Next time I will be extra careful.

My Depression can severely impact my motivation and self-esteem. I see myself as a bad, unworthy friend; who will not be good company to be around. The thought of putting on a smile, being chatty, and coping with crowds in order to meet my friend/s can become very daunting and I may even think they don’t really want to meet up with me. If I have cancelled before, I also feel very guilty and this will make me feel too ashamed to meet up again.

My BPD has an impact on my thoughts and behaviour around friends. I may be clingy, or I might completely isolate in order to avoid abandonment and rejection. I will go through times where I cannot bear conversation. I cannot cope with the idea and even paranoia that my friends aren’t as close to me as I am to them. I feel no one will ever love me as much as I love them, and I get scared of holding on too tight, so I do the opposite. It will take so much for me to make plans, and eventually I believe I push friends away. They may think I’m not interested in meeting up with them, when in fact the opposite is true. I am so desperate to be loved and accepted that I fear what will happen if I take the plunge and attempt to make plans.

My most recent mental health diagnosis is PTSD. My main trauma has little to do with friends and friendship groups, but it can affect how I act in busy situations. When I am out of the house I can feel unsafe and out of control. I am easily startled and always on my guard. Sometimes knowing I will be like this is too much to cope with and I will cancel plans.

This may seem like a lot to take in, and may leave my friends wondering what to do. For me, though, the worst things are lack of interaction from friends and not making plans. I may cancel many times but please keep the faith that there will be times when I am able to meet up. Just to be invited means the world to me, even if I can’t make it. Please include me. Feeling left out is something I’ve experienced ever since my childhood and it doesn’t take much for me to still feel left out now. If it confuses you that I cancel so often, then talk to me! I will be more than happy to explain what’s going on. It may even bring us closer together to know why I act the way I do. I promise I will always try my best to stick to our plans, and I will try not to cancel last minute without good reason.

Communication is so important in friendship. It may even become more important when one of us falls ill and cannot get out of the house as often as we’d like. Please continue to communicate with us and include us in your plans with friends. We may have not changed. Our health has.

About the Author

Amy Cullis is a mental health and chronic illness blogger from the UK. They have a BSc (Hons) in Clinical and Health Psychology. Amy blogs at Amy’s Mystery Illness, contributes to The Mighty and has a keen interest in writing, politics, and equal rights; alongside music and photography.

Links

 

Wednesday, 12 February 2020

Love and Friendship: What Valentine's Day Means to Me

Many moons ago I marked Valentine’s Day each year by exchanging friendship cards with one of my dearest friends, PJ. (Pamela Jane. She was Jane to her family, PJ or Pam to friends.) This was long before social media and instant messaging (yes really!) and we wrote letters to each other all the time, often by return of post. For years we shared the ups and downs of our lives that way; our hopes and fears and dreams for the future. I’m not sure we ever called each other best friends but that’s what we were.

Over time we drifted apart, as friends do sometimes. Our letters became less frequent. At some point we stopped sending each other Valentine’s cards. And then she got sick. Many years later I included our story in the first book I wrote with Fran.

I knew little of the disease [multiple sclerosis], and never took the trouble to ask or research what it meant. My friend spoke pragmatically of the impact it would have on her life, imagining and planning for a gradual physical deterioration. The illness advanced far more rapidly than anyone anticipated. I watched helplessly as the woman I had known was overwhelmed by disease, despair, and grief. The depth of her need terrified me. I wrote to her every day for what turned out to be the last two years of her life, but never once picked up the telephone. I visited her home only once, after her death, to attend a memorial ceremony.

From High Tide, Low Tide: The Caring Friend's Guide to Bipolar Disorder

For a time PJ replied to my letters herself. Sometimes she had someone write on her behalf. Eventually the replies ceased altogether. Maybe she resented my attention by that point or was simply too ill to notice. Only those who stood by her could tell me and I’m too scared to ask them. It doesn’t matter now. What does matter is that I wasn’t there for her in ways that might have helped or meant something to her. That’s not something I’m proud of. She died way too young (whatever that means) in 2005 at the age of forty-three. I miss her, especially at this time of year.

I still have a lot to learn about being there in the right ways at the right time. I tend to be either “too much” or “not enough.” Two or three years ago I was struggling with another friendship. My friend had a lot to deal with. I hadn’t turned my back or walked away but I was failing to support her effectively. Things had become pretty fractured. In fact it’s fair to say our friendship was on the line. One night Fran asked me if I was so earnest about helping this friend because I believed I’d failed others in the past, PJ included. I’m sure there’s some truth there. Guilt can be a powerful motivator. One way or another – I’m not sure either of us knows how – my friend and I made it through those times and are still together.

A few days ago I hurt one of my best friends. I’m not happy that happened and my failure to recognise how much she was hurting only exacerbated the injury, but I’m proud that we worked it through the way we did. I do feel I’m learning. I messaged her the next day:

We are honest with each other. You get to call me out when I do or say something wrong. I get to do the same. And we each hurt a little when it happens, because it is painful when you hurt or upset someone you care about. And we learn a little more about each other. And we make up. And we move on, a little bit wiser for it.

That seems to me what a healthy friendship is all about. We all mess up. What matters is how we deal with it. I was never able to do that with PJ. Her illness and the impact it had on her body, and ultimately her mental health, terrified me. I had no idea how to respond and never asked what she needed. And she never dared tell me or ask, perhaps because she knew I wasn’t up to the task. What she most likely wanted was for me not to turn my back on her, and despite all those letters and cards, that’s what I did. This isn’t about beating myself up over not being a perfect friend, then or now. No one is. To be honest I’m not sure I’d want to be friends with someone who was perfect! But it is about being honest, with myself and others.

So here’s a promise to all my friends this Valentine’s Day. Card or no card, I pledge to be the best friend to you I can be; the friend you deserve.

 

Wednesday, 5 February 2020

#TimeToTalk: Thank You for Not Assuming I'm OK

This year’s Time to Talk Day is Thursday February 6, 2020.

I wrote recently about feeling flat which is something that happens from time to time. Many of my friends live with significant mental health issues and it would be easy for them to dismiss my accounts of when I am feeling low. It is a testament to them and the nature of our friendships that I feel safe sharing how I feel no matter how mild that might be compared to what are often dealing with.

My friend Aimee Wilson blogs at I’m NOT Disordered about her lived experience with serious mental health issues including borderline personality disorder, self-harm, and suicidality. My moods, issues, and problems are mostly trivial in comparison to hers but Aimee has always treated me with respect and empathy. The following exchange is a great example of this. It meant a lot that she did not assume I was okay but checked to be sure.

Martin: Hiya. I’m making some notes towards answering the questions at the end of your travel post. The ALL THINGS TRAVEL & MENTAL HEALTH one.

Aimee: Awesome! Some very big questions!

Martin: I was feeling a bit flat this morning actually, so this new piece inspired by yours has given me a little boost.

Aimee: Why flat?

Martin: Dunno exactly. Getting bogged down with the writing is part of it (but also the writing gets stuck when I’m not feeling so great so it’s not always clear what’s going on).

Aimee: Catch 22?

Martin: Definitely. I’ve come to recognise that I get this way every now and again. It mostly passes in a day or so.

Aimee: Hmmm. I guess rough days are kinda normal. It’s hard because being in mental health I hear things like that and instinctively think you’re struggling, but actually a lot of people have hard days and don’t have a mental health diagnosis. Just so long as you’re safe.

Martin: Thank you for not assuming I’m OK, if that makes sense.

Aimee: Of course! Just because you’re usually the support doesn’t mean you don’t need it yourself sometimes! And I’m here for you just as you are for me.

Martin: I feel better already! OK, I guess I’d better get some work done. Catch up later.

I checked back with Aimee a little later:

Martin: Our chat really helped motivate me and lift me from feeling low. Thank you.

Aimee: I’m glad it helped.

What Aimee did and said might seem simple — even commonplace — but it is precisely such “simple” conversations that are so important. As I’ve written elsewhere:

It’s extraordinarily valuable to me that I have several people who I know I can go to. I trust them and I trust myself with them. These are the people I know I’m safe with, that I can be vulnerable with if I’m feeling under the weather or something’s going on for me.

No matter who we are or what we are living with, we all need to feel that our feelings and problems are valid. It doesn’t take a lot to offer that sense of validation to someone. We can all do that. You can do that. Time to Change, the UK’s largest mental health campaign challenging stigma and discrimination has chosen the party game “Would you rather?” as the focus of this year’s Time to Talk Day, which is Thursday February 6, 2020.

Mental health problems affect one in four of us, yet too many people are made to feel isolated, ashamed and worthless because of this. Time to Talk Day encourages everyone to be more open about mental health – to talk, to listen, to change lives. We know that talking about mental health can feel awkward, but it doesn’t have to. This year, we’re using the popular game ‘Would you rather?’ to help break the ice and get the conversation flowing.

To get involved check out the Time to Change website. Share why you’re choosing to talk about mental health by using #TimeToTalk on your social media posts. Follow #TimeToTalk on Twitter and Instagram, and reply to and share posts.

 

Monday, 3 February 2020

Would You Rather? Time to Talk Day 2020

Time to Talk Day 2020 is Thursday February 6, 2020.

Time to Change, the UK’s largest mental health campaign challenging stigma and discrimination has chosen the party game “Would you rather?” as the focus of this year’s Time to Talk Day.

Choose talk, change lives.

Mental health problems affect one in four of us, yet too many people are made to feel isolated, ashamed and worthless because of this.

Time to Talk Day encourages everyone to be more open about mental health – to talk, to listen, to change lives.

We know that talking about mental health can feel awkward, but it doesn’t have to. This year, we’re using the popular game ‘Would you rather?’ to help break the ice and get the conversation flowing.

I have a confession to make. I’d never heard of, let alone played, this “popular game” until I started writing this article. Maybe I don’t get invited to the right kind of parties! To save you the trouble and embarrassment of googling it (as I had to!) the game is played by asking a series of questions of the form “Would you rather [do this] or [do that]?”

The questions can be light, deep, funny, silly — whatever you like. The idea is to get a conversation started in a fun and potentially interesting way. Any number of people can play, individually or in teams. You can even ask and answer the questions on your own, perhaps in a diary or journal. It’s easy to see how this fits the Time to Talk Day idea. The Time to Change website has examples of questions you might use, including:

Would you rather be stuck in a spider’s web or talk to a friend who feels trapped in their thoughts?

Would you rather kiss a jellyfish or talk to a colleague who feels all at sea?

Would you rather have the neck of an ostrich or talk to a friend who’s burying your feelings?

I thought about it and came up with a few of my own. One resonated with me especially. I’ll come back to that in a minute.

I’ve been a Time to Change Champion (the charity’s word for its registered volunteers and supporters) for several years in a personal capacity and co-lead the mental health and well-being team at work. I’m passionate about what we are doing at BPDTS Ltd and proud to have led the initiative to sign the Time to Change Employer Pledge. You can read our pledge on the Time to Change website.

I’m also one of the company’s team of mental health first aiders and it’s here that my Would you rather? question feels most relevant. The mental health first aider role involves being available to colleagues who want to reach out for a chat, information, or signposting to relevant support services.

It’s become one of the most rewarding aspects of my job. I’ll go further. My involvement in the mental health and wellbeing working group has become the single most rewarding aspect of my job, eclipsing the technical role in personal significance. I’m particularly excited to be involved in arranging mental health first aid training for others within the company.

Mental health first aid (MHFA) is certificated training delivered by trainers affiliated to Mental Health First Aid England or equivalent organisations around the world. I’ve described my experience taking the training previously. You can read how it equipped me to work in the mental health arena on the Mental Health First Aid England blog.

A healthy workplace is one which fosters an environment where we all feel able to talk with our peers, team leaders, and management. You don’t need to have completed special training to do this of course, but our mental health first aiders provide confidential points of contact. As I mentioned earlier, we offer confidential conversation, information, and signposting to support services provided within and by the company, as well as external organisations and professionals.

I hope colleagues throughout our organisation feel able to reach out to us without feeling they are imposing on our time or interfering with the techie side of our role. In my case at least, that’s never going to be an issue. There’s literally nothing more important to me than these kind of conversations.

So, what was the question that resonated so strongly with me?

Would you rather [insert any work-related task here] or have a conversation about mental health with a colleague?

I think we know the answer to that one!

 

Get Involved

Time to Talk Day 2020 is Thursday February 6, 2020. To get involved check out the Time to Change website. Share why you’re choosing to talk about mental health by using #TimeToTalk on your social media posts. Follow #TimeToTalk on Twitter and Instagram, and reply to and share posts. Oh, and have fun!

 

Wednesday, 29 January 2020

A Landscape of Labels: Mapping Illness and Wellness

Imagine looking down on your country or continent from a plane. You are aware of the general terrain: mountains, lowlands, lakes and rivers. Perhaps you recognise some locations – places you have visited or heard about – but there are no lines or labels down there on the ground to distinguish this country or state from the next.

Now take out a map of the same area. The map is not the landscape, it is a model of the landscape, and it is full of labels. This area has a line drawn around it. The area inside is labelled so. If it is a political map, the line might define a country; this line a different country, this line a county, state or principality.

Select a different map of the same region. Maybe this one displays regions in terms of economic affluence, manufacturing output, average rainfall, or languages spoken. The area that was labelled “England” will now carry other labels. The labels applied depend on their definitions, and which maps we choose.

Maps and labels are incredibly useful. Without them we would, literally, not know where we are, individually or in relation to one another. Travel would be a challenge, travel planning even more so. On the political map I live in an area labelled “Newcastle upon Tyne” within the area labelled “England.” Fran lives in an area labelled “Portland” within a rather large area labelled “United States of America.” The map of languages will tell us that our nations each have English as their first language. We learn some interesting and useful things, but the labels do not tell the whole story. They are not who we are.

I find it helpful to think of health and wellness in a similar way. There is an area of the broad landscape of emotional, physical, and mental experience which on the diagnostic map is labelled “bipolar II disorder.” Parts of this area fall within a larger region labelled “depression.” If I choose a different map, some of the labels may be different. The “depression” region is larger, maybe. There is a region labelled “manic depression” which more or less corresponds to “bipolar disorder” but doesn’t match exactly. Another map has only two regions: “health” and “illness.” You get the idea.

Wherever we are on the ground the labels applied to us depend on who is looking at us and which maps they are referring to.

The labels of illness are useful where they help to define where we are on the landscape of wellness, and which treatments and approaches may benefit us. We can think of treatment as helping and encouraging us to move from our “regions of illness” and journey towards regions labelled healthy on the map. Fran might move in and out of areas labelled “mania” or “depression,” for example. If it is not possible to make these journeys for some reason, treatments can help us live more comfortably wherever we find ourselves.

Knowing that Fran is American (was raised and lives within the geographic area labeled “America”) helps me draw useful inferences about her cultural identity, and likely points of similarity and difference between us. Similarly, knowing Fran lives in a region of the wellness landscape labelled “bipolar” helps me to approach her with a degree of understanding and empathy. In both cases of course, it is possible to draw false conclusions, or apply the labels without reconciling them with who she actually is.

It is my responsibility to remember that she is not “an American woman with bipolar,” but an individual with her own unique, personal experiences and story. The same applies to how we think and behave towards ourselves. We can use the labels for what they tell us but take care not to over-identify with them.

Fran, you were saying last night that one of the most important things with us is that I don’t see you as “an ill person.” That I see the person, the whole person that you are. You mentioned that the labels (I think you meant labels like bipolar, cfs, fibro) are useful because they help you focus on why you have certain issues, and also because they qualify you for benefits. But you said it is possible to become too attached to them?

Yes Marty.. The labels help me care for myself.. They help me to understand why I do what I do sometimes.. The problem is if I make that my identity.. the way engineering was an identity for me before I got sick..

Misinterpreting the labels of mental illness is at the root of stigma and prejudice. We don’t have the time or the energy to get to know everyone we meet. Labels act as a shortcut. I suggest it is not possible to completely avoid this kind of thinking; we appear programmed to label the world around us and it is likely we could not function as social beings if we did not. The important thing is to recognise that the labels we apply say as much about us and the maps we are using as they do about the people we are labelling.

 

Wednesday, 15 January 2020

Every Day Essentials for the Successful Blogger

because we wrote down one night everything in it
~ Adrian Henri

In a follow up to sharing my blogging workflow I thought I’d give you a behind-the-scenes peek at my EDC (every day carry). These are the items I take with me when I’m out and about for my blogging and journaling. This has been on my to-do list for ages. I was finally inspired to write it by a conversation with my friend and fellow mental health blogger Aimee Wilson.

Aimee: What’re you doing?

Martin: Right now, sorting what to bring out with me tomorrow. I carry so much in that green bag of mine, but it’s all essential blogging and writing stuff! I keep meaning to do a blog post about all I carry.

Aimee: That’s so funny because the new post I’m writing is about all the essentials for blogging!

Martin: No way! Really?

Aimee: This is why we’re best friends — we have so much in common!

You can read Aimee’s Essential Items for Bloggers on her blog I’m NOT Disordered. We approach things differently (compare Aimee’s post inspired by a Hidden Histories event with my more prosaic account) but with her permission I’ll use Aimee’s organisation of items into stationery, notebooks, technology, and tech accessories. To these I’ll add personal items and the bags I carry everything around in. I’ve listed everything I normally have with me, with buying links where possible.


Stationery


Notebooks


Technology


Tech Accessories


Personal Items

  • Bisodol indigestion relief tablets
  • Paracetamol 500mg tablets
  • Ibuprofen 342mg tablets
  • Comb
  • Mints

Bags

Apart from the printers (I would take one or the other, not both) all of the above fits — just — into my trusty Lorenz Multi functional canvas bag/holdall. Clipped to the outside I have two brass binder clips and a small compass which is more decorative than functional — but you never know when you might need to know which way is north!

I also carry a cotton “Always Take the Scenic Route” shopping bag bought from Mountain Warehouse in support of the Sreepur Village in Bangladesh.

If I need more space the Lorenz fits perfectly into my Jack Wolfskin Berkeley 30L Daypack.


What Do I Do with It All?

That might seem an awful lot to carry around with me all day, so what do I do with it?

I keep a personal dairy in a series of Moleskine notebooks. My current diary is always with me so I can capture my thoughts and ideas whenever I am moved to.

I use my Standard Traveler’s Notebook for work notes and for drafting blog posts. The lightweight insert is ideal for blogging; the thinner paper means I have more pages to write in than with a regular insert.

My Passport Traveler’s Notebook is for memory keeping. I keepsake days out, holidays, and other special occasions. I decorate the pages with washi tape, stickers and stamps, also photos printed on my HP Sprocket or Paperang printers.

The gratitude journal was a recent gift from a friend and I keep it with me as a prompt to acknowledge and record moments of gratitude and appreciation through my day.

I love letter writing and keep a few sheets of writing paper, envelopes, and postcards in my bag.

The adjustable stand and Bluetooth keyboard turn my phone into a mini laptop when I want to type up my rough drafts. The stand is also great for selfies, time lapse videos, and video calls. I use my Bluetooth headset to listen to music, for voice and video calls, and recording audio blogs.


One Final Note

The Adrian Henri quotation at the top of this article has meant a lot to me since I first encountered it years ago. A fuller quotation from what is quite a long poem reads:

room gone now
room preserved forever
because of you
because of me
because we wrote down one night everything in it
because it looked like you
even when you weren’t there
room rented now like my dreams
to someone else

The idea of writing down the contents of a room in exhaustive detail remains extraordinary to me. It’s something I’ve thought about but never attempted. This article is my modest tribute to Henri’s genius.