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My Experience of Living with Chronic Conditions. Part Four.

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible. Including my mental health ones.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

The one I am going to talk about today is the hardest to talk about. I was tempted to leave it until the end of the series, maybe gloss over it, but the thought of putting it off was just making me anxious, so I decided I would write it today. Even though I will be worrying about the repercussions all day. And beyond! I could hide this aspect of myself but I can’t expect people to be open and understanding of disabilities if I’m not willing to discuss my own. And, also, authenticity is really important to me.

So, here goes.

I have Emotionally Unstable Personality Disorder/Borderline Personality Disorder/Difficult Life Syndrome* (take your pick on which label you use).

The NHS definition of EUPD/BPD is:

Symptoms of borderline personality include being emotionally unstable, having upsetting thoughts and acting without thinking.

The main treatment for borderline personality disorder is a type of talking therapy called psychotherapy.

The cause of borderline personality disorder is unclear. It’s been linked to traumatic events during childhood, such as neglect or abuse.

Well, that sounds jolly!

I have that.

It’s a difficult diagnosis to talk about, partly because of the stigma attached to it (the murderers in so many crime dramas are committed by people with BPD; so far, I’ve not murdered anyone); and partly because it’s one of the “catch-all” names given when medical professionals have given up trying to find a potentially more suitable one.

I was diagnosed with it around nine years ago, though I’ve lived with it for far longer.

The why I have it, I won’t talk about it for this piece, but, for me, I would much prefer the condition to be more widely known as “Difficult Life Syndrome”. It’s semantics but, when words like “unstable”, “borderline”, and “disorder” are used, they feel more dangerous, more volatile, scary, whereas, “Difficult Life Syndrome” does what it says on the tin. I have this condition because I’ve had a difficult life.

How does it affect me?

I have been told many times that I am “high functioning”; that I can’t possibly have it that bad because people don’t see the same in me as they do in other people.

The thing is, partly because of the stigma attached to the condition, but mostly because of the life I’ve lived, I have become an expert at masking it, because that was the safest thing for me to do. If ever they give out Oscars for long term acting whilst living, one of them will have my name on it.

But, it affects every day, every hour, of my life.

Part of the condition for me is hypervigilance.

This means that I do these things:

  1. Every time I walk past the front and back doors, I have to check to ensure they’re locked so it’s harder for an intruder to break in. That’s the thought I have every single time I pass the doors.

  2. Every time there’s a knock on the door, anxiety swells within me, wondering if this is the time the person knocking is here to break in, rape, or murder me. Or all three.

  3. Every time I walk past a plug socket, if it’s not being used, I have to switch it off because I have a fear of there being a fire.

  4. Every time I get up at night for a wee, I have to turn on the light in each area I pass through, and check behind the shower curtain, to ensure no-one has broken in. I hold my breath the whole time.

  5. Every time I see a notification on my social media,or my emails, I worry that I’ve done something wrong, or that someone is going to tell me how rubbish I am.

  6. Every time I am in a room with other people, I have to do regular surveys so that I know who is there, who is getting too close, who I don’t feel I can trust.

  7. Every time I use public transport, I regularly scan my fellow passengers as a risk assessment.

  8. Every time I walk anywhere, I am constantly checking who is around me and monitoring how safe I feel.

And I do mean every single time.

I also have frequent bad dreams. When I say I’m not good in the mornings, people make jokes, implying I’m lazy; I make some excuse about my nighttime medication not wearing off quickly. In truth, I don’t get that hazy, slow wake up feeling; once I’m awake, I’m AWAKE!!! I’m aware of everything around me, sounds, sights, smells. I’m aware of the pain there is in my body immediately. And then I have to begin the transition from a night of vivid dreams to a day where I am constantly alert. I need that quiet time; without it, I am exhausted and I feel vulnerable, because I don’t feel as alert. On occasions, I will do something before 10am, but it takes me a couple of days recovery before I feel like me again.

I know there will be people reading this that know me, and these things will come as a surprise to them because I am high functioning. They will be surprised that happy, confident Vie has moments of anxiety before every single interaction in every single day. It’s why I get “peopled-out”; I love being around people (now) but it is so tiring and I really need, and value, my days when I am alone.

When writing something like this, that is so personal, it’s easy to gloss over a lot of the realities of it, and, also, there are limitations on what to write, as you don’t want people to be asleep before the end of it. So I will round it up now, maybe to re-visit at another time.

But, before I end this piece, I want to explain that, although I have written a piece that covers a few pages of A4, there’s a lot more to say. I want to tell you that living this life is not easy. I want to tell you that I have worked incredibly bloody hard to get to the level of functioning I am at now, and that I have to continually work hard to maintain it. Sometimes, thoughts pop into my head that tell me to stop trying, to go back to being the reclusive human that hid away from so much, but then I remember what I have, what I have achieved, and, though I need to rest at that time, it gives me the courage to keep moving along.

And I remind myself that, because of the life I have had, I am really good at my job because, amongst other things, I see things others don’t see. And, goodness! I have lived through decades of hell and come out smiling! Of course I am going to have the experience to teach people how to find the best in their lives!

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

*I can only talk about my experience of living with this condition; everyone else with the condition will have different experiences because we’ve all had different lives.

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