My Advice To The Newly Diagnosed

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“I thought the doctor’s diagnosis was the first step to mending her. I know now that a diagnosis is taken in like an orphaned dog. We brought it home, unsure how to care for it, to live with it. It raised its hackles, snarled, hid in the farthest corner of the room; but it was ours, her diagnosis. The diagnosis was timid and confused, and genetically wired to strike out.” ~ Christa Parravani

Inspired by a recent Twitter hashtag (which I would link to but it seems to have been overrun by unhelpful homeopaths and conspiracy theorists) I thought I’d share some of the things I’ve learned about my mental illness that it would have been nice to have known from the beginning.

• This probably isn’t going to just fix itself and go away

I’ve written in a bit more detail about how the process has worked for me at least; but, basically, you know how if you get a virus, like say, flu, in most cases you’ll take to your bed for a week or so, feeling thoroughly miserable, but by the end of it you’ll be well again?

Like, you feel better, everything goes back to normal, and that’s it?

Or, you break something, or find some sort of growth, and so you go in for surgery, then you come out, take some recovery time, maybe have some physio, and then you feel better again and everything goes back to normal?

Basically, the way you’re used to thinking of being ill as being a temporary interruption to life – so long as it’s not going to kill you.

Yeah. Unfortunately I have to tell you that mental illnesses don’t often work like that.

They come and go, or they stubbornly persist, or you can manage them but you have to stick with the treatment program indefinitely. This isn’t a situation where you can expect to just feel better and have everything go back to normal. It’s more likely that you’ll need to make some level of adjustment to this being the new normal.

Which, well, sucks. Quite frankly.

But, y’know, I suppose it could be worse. We could have been diagnosed with pancreatic cancer and then we’d be completely, totally, royally, screwed. So, there’s that I suppose.

• People won’t understand what you’re dealing with

The other thing with something like the flu, or a cold, or the chicken pox is that pretty much everyone’s had it, so there’s kind of a collective conscious understanding of what it is and what it feels like.

Not everyone has had a mental illness. And, even if they have they might not necessarily have recognised it as such.

The thing with minds is we don’t really have any kind of frame of reference for what’s going on in anyone else’s besides our own.

Hopefully one day we’ll evolve some helpful level of telepathy but in the meantime unless somebody describes something happening in their brain that you’ve also had happen in yours it can sometimes be quite difficult to understand it.

So, if anyone starts spouting some nonsense that’s clearly coming from a place of ignorance my best advice is just not to listen to them. It’s not your fault, it’s not necessarily their fault, and there’s not a great deal you’ll be able to do about it on your own while you’re not feeling very well.

Oh, by the way, most doctors are just as hopeless with this as regular people, even ones who are supposed to specialise in this kind of thing.

And nurses can be even worse.

Apparently they only get something like three lectures on mental health in their entire three year degree course. Which seems ridiculous to me. If around a quarter of your patients are going to be experiencing some sort of mental health issue it seems to me that a proper training course would offer a proper grounding in how to respond to those people’s needs; or at least in how not to make them feel any worse.

But, hey, what do I know? I’m just a person who’s spent the last five years having to manage with uniformly terrible nursing care.

 

Sorry. This all beginning to sound terribly depressing, isn’t it? I don’t mean to scare you, I just want you to be properly prepared, and it isn’t all going to be doom and gloom, I promise.

 

• Mental Health treatment is not an exact science

As you’re poking around the internet looking for more information about depression, anxiety, bipolar, PTSD, schizophrenia, or whatever else you’ve been diagnosed with, you might stumble across some pretty fierce debates about how to treat it.

Or, indeed whether you really have anything to treat.

There are a lot of people around with very strong opinions; about whether psychiatry or psychology has the best approach to mental illness, whether receiving a diagnosis is likely to help or hinder people, whether people should or shouldn’t take meds, what the best kind of therapy is, and even whether mental illnesses are actually a thing.

Ignore it.

Just don’t get involved.

Unless you really want to.

For the most part it isn’t really a proper debate, it’s just a lot of people arguing at each other, none of whom have the slightest intention of budging from their own position what ever anyone else might say to them. I can’t see how it’s particularly helpful to the people involved in it, nevermind those of us on the sidelines.

In the UK at least, the debate is also pretty much moot. In most areas there’s basically only one treatment path open to anyone so you’ll either go for that or go it alone.

When it comes to medication, do what you think is best for you, in consultation with your GP or psychiatrist.

If you do choose to take the medication be aware that you might not get the right one for you on the first attempt. I think my social worker told me that people end up taking an average of six over the course of their illness.

I’ve so far had, I think, five.

The first one if anything made me worse, the second one was excellent but then it stopped working, the next one didn’t work, and then the one I’m currently on has been great.

Okay, that’s four, plus diazepam, that’s Valium, wonderful stuff in my own opinion, and zopiclone, which is a sleeping tablet.

Some of them, most especially the ones that have worked have had some quite alarming side effects until my body has adjusted to them. I’m really glad I stuck it out, I don’t think I’d have got to the point I’m at now without them, but I can also understand why some people choose not to.

Neither way is any more virtuous than the other, it’s about finding what works best for you. Get as much information as you can and don’t be afraid to ask questions.

 

• You have an illness or a condition, not a personality flaw

Some of the people around you might think otherwise. Some of them might even try to tell you otherwise.

Don’t listen to them.

They’re idiots.

Listen to me instead. I’m most definitely not an idiot.

I also found that I started getting better much more quickly once I succeeded in cutting those people out of my life entirely, but that’s not always possible for everyone I guess.

There’ll be a whole lot of other people who you might think are judging you who aren’t necessarily. It’s just that a lot of people don’t have any real frame of reference for, or understanding of, words like mental illness, or psychiatrist, or anti-depressant/anti-psychotic.

That’s fine, but that’s their thing. Let them deal with it. You’ve got enough on your plate.

I’ve found that if you spend enough time talking about this like it’s just another normal part of your life – which it is – everyone else will eventually adjust and treat it accordingly.

 

• It’s really important that you prioritise taking care of yourself right now

Taking care of yourself and figuring out what you need isn’t selfish, it’s essential.

If you’re not up to doing things right now, you’re not up to doing them. You’ll be far from the only one if you haven’t had any clean clothes, dishes, or cutlery for the last few days, weeks, or even months.

That’s okay.

They don’t have to be a priority right now.

And if other people ask how they can help it’s okay to ask them to do that stuff for you if that’s what you need. The same goes for cooking, grocery shopping, and dog walking.

Try to explain what’s going on to those closest to you so that you don’t become too isolated. You might find that you are still able to manage some social activities if your friends are willing to be accommodating and you can plan small, manageable things when you feel up to it, rather than big group activities in noisy places.

I’d also recommend joining the ‘mental health community’ either through support groups or online.

Twitter is an excellent resource for many, I really don’t know what I’d have done without it. There are also plenty of forums around that you could join such as Black Dog Tribe.

Have a look around and see if you can find something that you feel comfortable with. It can be so helpful just to have a place to go where you can chat to people who understand exactly where you’re coming from and you don’t need to worry about censoring yourself for fear of hurting anyone else who doesn’t.

I’d also suggest seeking out some of the wealth of beautiful writing that’s out there, in books and blogs, by people who’ve been there. It can help you to feel less isolated and more understood. It may even help you to put into words things you’d never realised there were words for, that’s certainly been my experience anyway.

 

I’ll leave it there as this is getting rather long. I think I’ve covered the most important things.

If you think there’s anything I’ve missed please ask me or tell me about it in the comments. What advice do you think is the most important?