I'm Sure I Was Somewhere. Do I Get a T-Shirt?

What if you were there already and didn’t realise because there was no big red YOU ARE HERE arrow on the map; no neon sign or text alert saying “This is it. You’ve reached that place the others were talking about.” There should be a kiosk selling BEEN THERE T-shirts or badges. Then you’d know. And others would know too.

They say if you’ve never experienced something for yourself, you can’t understand what it’s like. I get the point, but it’s not precise enough for me. How similar must my experience be to yours, for me to understand what you’ve been through? Exactly the same? Somewhat similar? Who gets to decide?

This is not a trivial question. Depending on the circumstance, it can affect friendships and other relationships. In the health sphere, it can affect access to services, care, and support. Peer support in particular is predicated on the concept of shared experience:

Peer support brings together people with shared experiences, and these experiences can vary. For example, you might share a diagnosis of a particular mental health problem or similar personal interests. Or you may have shared experiences, such as hearing voices, identifying as LGBTIQ+ or having a shared cultural background. (Mind)

What counts as shared experience, though? Some things are pretty black and white. Redundancy. Marital breakup. Homelessness. Sexual or physical abuse. The death of a spouse or child. These have either happened to you or they haven’t. But not everything in life is as clear cut as that, mental illness included. Even if you’ve experienced something, does that automatically mean you understand how it would be for someone else?

The “What if you were there and didn’t realise” paragraph at the top of this post came to me as I was thinking about how low I’ve felt of late. Looking through my journal, there are things I’m used to hearing from others, but have rarely felt — and even more rarely expressed. Have I just been feeling low or is it something more serious? I tend to assume my experiences, dark moods included, scarcely register compared with what others go through. But what if I’ve reached somewhere they would recognise. How would I know?

Frequent readers of this blog might answer on my behalf. Talk to someone you trust, Marty. Share how you’re feeling. Above all, believe that your experiences and feelings matter and are as valid as anyone else’s. I smile as I write that. I love having my own words and ideas bounced back to me! Good friends do that. Sharing can certainly help. It’s the basis of the friendship Fran and I have grown over the past ten years. Above and beyond the value of having a safe space in which to vent, sharing helps us baseline what we’re going through. It can be profoundly validating.

Sharing also allows the other person into our world. This is important because it addresses a question I’m sometimes asked about me and Fran: “If you’ve never been depressed or manic, how can you know what it’s like?” Fundamentally, I can’t know what it’s like, and it’s important I never lose sight of that. There are certain advantages to not understanding another person’s situation, but an informed awareness of what it means to live with illness helps me support Fran more effectively. As I’ve written elsewhere:

With that in mind, I try and learn as much as possible, by talking with Fran and with others, by reading widely and by taking all the training courses I can find. I work on the basis that Fran is doing her best to share with me the reality of her situation, and share my own understanding with her. In this way we honour each other and grow together.

Some experiences are too powerful or devastating to comprehend unless you’ve lived through something similar. I can listen to someone’s story of abuse or rape, for example, but I’ve experienced nothing that even approximates to what they’ve been through. A friend expressed it perfectly:

If I met someone and we talked about trauma, I can acknowledge their experience but not much more, other than hold space. I need to respect their journey. I can empathize but do I truly understand that experience? I don’t think so.

Furthermore, everyone responds to events differently and is affected differently by them. Another friend told me she knew of others who’d gone through what she had in the past, but that didn’t mean they’d had the same experiences.

In the mental health arena, a clinical diagnosis is the closest thing to a BEEN THERE badge or t-shirt, because it implies a certain shared history, symptoms, or behaviours. People with the same diagnosis may also have medications, therapy, or other treatments in common. My friend and fellow mental health blogger Aimee Wilson was originally diagnosed with all nine criteria for borderline personality disorder (BPD). She says this gave her insight into others she’s met who satisfied fewer criteria when they were diagnosed. (A diagnosis of BPD can usually be made if you answer “yes” to five or more of nine questions.)

Even so, two people diagnosed with the same mental health condition will experience it differently. Aimee is the only person I know well who has a diagnosis of BPD, but I have three friends diagnosed with bipolar disorder and their lives are impacted very differently by it. Knowing Fran’s support needs, for example, doesn’t mean I necessarily know what my other friends need. I consider myself fortunate that I have a broader awareness of what bipolar disorder can mean for someone, from seeing how it affects these friends in different ways.

A word of caution is needed when it comes to sharing. Oversharing, or sharing inappropriately, risks overwhelm and rejection. Having someone’s unexpurgated experience thrust in your face can be unnerving, awkward, or even triggering, as a friend of mine discovered recently. She agreed with me, however, on the principle of shared experience. In her words: “The idea that to be empathetic we have to have gone through the exact same thing as someone else is unrealistic, really. It can be helpful and make for a stronger connection, but it’s not necessary.”

Returning to my original “what if you were there” scenario, there’s no certain way of knowing where we are. No YOU ARE HERE sign painted on a wall or the pavement. No GPS coordinates or what3words address we can share so others can say “Ah yes, I’ve been there too,” or find us if we lose our way. All is not lost, however. We can talk to the people we meet along the way. We can compare itineraries and histories, exchange contact details and do our best to keep in touch when our paths diverge. And if there’s no T-shirt stand, maybe this one will do.

 

Photo by Fallon Michael on Unsplash

 

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.

 

Visual Spaces

By Roiben

I write this, looking back over a lifetime of not fitting into boxes. I have a severe hearing loss. I am Type 1 Diabetic. I have a mental illness. I am bisexual. I am many things that do not fit the “norm”.

Today though, I want to talk about the thing I probably spend the least time talking about. I am visually impaired. I had cataracts as a baby, which permanently damaged my vision. I am blind in my left eye. It notices change in light and movement — but it can’t tell what is moving. My right eye has some damage to the cones and rods which mean I find it hard to distinguish between certain colours and shades. I also have Astigmatism and, as the right eye is doing all the grunt work, it can get tired easily. I also, thanks to years of Diabetes, have Stage 1 Retinopathy.

Ultimately, this means I lack stereoscopic vision — I am not able to judge distance or speed of objects and have no depth perception. I am one of those people who need markers on steps and curbs to get around in my day to day life.

What does this have to do with boxes, I hear you ask. Well, although I am visually impaired, I am classed as having too much vision in my right eye to be legally classed as Partially Sighted. The regulations and checks require a significant loss of vision in both eyes to count. So, despite being fairly severely visually impaired in lay-man’s terms, I do not fit into the legal box-ticking exercise that could enable me to get more assistance.

According to the Royal National Institute of Blind People (RNIB), the UK’s leading charity supporting blind and partially sighted people, there are over 200 eye conditions — and there are many, many people, like me, who do not fit the boxes. As is the case with many such boxes, there are many people falling between the gaps, who perhaps actually need the help the box checking would provide. It is perhaps more well known in the case of Mental Health, where someone can literally be told they are too ill, or too chronic to get the help they so desperately need. In this instance, I wonder how many of those people who do not fit the regulatory definitions and limitations could actually really, really do with the help?

As things stand, my vision in my right eye is deteriorating. The Astigmatism is getting worse and I have had to change my glasses prescription to match. I have to keep a close watch on my blood sugars as well, because that affects my retinopathy — which is always at a risk of getting worse.

Maybe one day, I will fit into that box. Maybe I never will. Either is okay. I am me, and I have grown up with all these things and in doing so have put in place my own coping mechanisms. I learn routes and places. I am a creature of habit and often put things in the same places, or walk the same route from A to B. I know how many steps there are on certain staircases and with practice can walk the ones I know with ease. I have learnt to keep a clear route between my bed and the door, kitchen and toilet.

The main problems come when there is a change. A diversion. Shoes left out in my “path” or a chair moved. When walking unknown places, or a different route, I tend to slow down, to take more notice and be more cautious. I trace my route along walls and banisters and follow any signs or maps I can find. Then I remember it, in case I have to take the same route again.

As with all my disabilities, I have adapted and learnt ways “around” it in order to continue living life the best I can. I just worry for those who perhaps have not yet learned adaptations, or who struggle in their own ways and could do with getting more help.

 

About the Author

You can find Roiben on Twitter (@roiben).