6 Things I Wish I Knew Then

When I got home from being in hospital with my first panic attack (I thought I was dying, don't judge me) I spent the next four days in exactly the same amount of pain I was in when I arrived in A & E. I realised that this wasn't a one off; I'd have to educate myself about it and it was becoming clear that it was something I'd have to deal with proactively. The problem was that, while panic attacks and panic disorder aren't exactly uncommon, there seems to exist only one prevailing view of what a panic attack looks like and that didn't really match up with what I was experiencing. Turns out it's a much more complex condition than I had thought in those first few days, weeks and months.

If I had been asked the day before my first panic attack to describe one, I would have based my description on the kinds of panic attacks we see in film and TV- breathing into a paper bag, streaming tears, laboured breathing, irrational and erratic thought patterns, frantic jerky movements, a lack of focus. I know that these symptoms do occur with panic attacks or panic disorder, I just wish that I had known that there is an endless list of hideous symptoms of panic. I wish the hospital had explained to me that the intensity of my first panic attack wasn't entirely out of the ordinary and that panic attacks aren't one thing- I wasn't a medical freak. Everything I read about panic made me believe that what I was experiencing wasn't actually panic. I thought the hospital had missed something and it was a heart condition.

Here are 6 things I've spent nearly 5 years working out, a couple of which could have been jotted down by a medical professional for me at some point, but we're here now. These are the things I would tell my 2014 self, the poor naive twat.

1. Panic attacks are not one thing

People sometimes ask me what a panic attack is like. While I find it very difficult to put my experiences with panic into words, I often describe it as battling a hydra- I chop one head off and two grow in its place. When I learn to master one symptom or, at the very least, when I accept it as a part of my illness, it either mutates into something much worse or disappears altogether to be replaced by something completely new.

The most significant and constant symptom for me is chest pain. Always on the left hand side of my body, most of the time it's a painful pounding feeling. Sometimes it's a constant sharp shock from where I reckon my heart is, going down to the top of my left leg. It can spread across my back and neck. Most of the time the pain spreads down one or both arms and they go numb, weak, unusable or tingly.

Do you want to hear about some of the more gnarly symptoms? Of course you do you ghastly shits. I remember once being in town and my vision suddenly betraying me. Everything was moving past me really quickly and it was a bit like the opening scene of Evil Dead, except filmed sideways using a fisheye lens. There's the constant shaking hands that make me look like an addict. There's the sickness, the rashes on my arms, the clawing at my face and legs while I sleep.

It's taken me years, but I'm now at a point where if some weird affliction arises, I just assume it's panic or anxiety related. Every tiny insignificant twinge or ache used to be a death sentence in my head, but now it's only the chest pain I struggle to get over. That's the most prevalent issue and the thing I absolutely cannot rationalise when they occur- almost always at night. I spend nights in horrible pain, fighting sleep and trying so hard to keep myself awake in case I have a heart attack and need to get help. It looks so irrational written down, but panic attacks are often inherently irrational.

When I explain some of my symptoms to people they can be really surprised that a panic attack can manifest itself in such ways. I'm still right there with them- every time the head I cut off is replaced by two new heads I think “right then, how's this happened? How's my head managed to conjure this fresh hell?” It's a very physical illness, despite the fact that the nucleus of the condition exists in my head.

2. Most people don't have a fucking clue what they're on about

At some point during those initial days of experiencing panic attacks, I very clearly remember reading online that panic disorder was “highly treatable.” I think it might have been on the NHS website. Can I just publicly address whoever wrote that and emphatically tell that person to fuck off.

I could build a fortress with the amount of sheets of paper doctors, psychiatrists and mental health nurses have given me about “low mood and anxiety.” Reams of paper covered in some really woolly and questionable advice- light a candle, wash your hands, write a sonnet for the love you lost to the sea. Shit like that. Short-term solutions for a problem that almost always needs a long-term approach. The sheets were covered in anything other than advice as to how to actually deal with my problems.

Because everyone’s panic is its own beast, it's difficult for a consensus to be reached in terms of treatment and most of the sufferers of panic disorder that I've spoken to about it have very different strategies that they've had to find for themselves through research and trial and error. Effective treatments are either unavailable on the NHS or they carry with them a mammoth waiting list. Even when I have accessed treatment, it's been largely ineffective or I've been unceremoniously expelled from the treatment having missed a session due to anxiety. This is why I eventually just accepted it as part of myself and found ways to live with panic, rather than constantly striving to completely recover from it by putting all hope into a new doctor or a new treatment. It would be great if I did "get better"- it's something I hope happens one day but I no longer think of the future in terms of “when I'm better.”

The one treatment I have encountered that has had a huge impact on the frequency and ferocity of my panic attacks- aside from the medication I'm on for it, which was an absolute saga in itself to find- is EMDR (Eye Movement Desensitisation and Reprocessing- a treatment I wrote about here). Even then, I had to go private to access EMDR and this isn't something most people can do. It's an almost completely inaccessible treatment hardly anybody has heard of despite the fact that recent research into it has been overwhelmingly positive. I hope it becomes accessible on the NHS and it gets more attention, funding and research because it really changed me.

3. You don't have to be stressed to have a panic attack

It's a question that I never resent being asked and I'm really glad that people care enough to ask it: “what brought it on?”

Maybe nothing, maybe something. Most of the time I don't even know until I'm well out of the woods, I can look back at the surrounding circumstances and decide whether it came from nothing or something. This is just one of the many fun things about panic disorder- the attacks are as random as they are frequent. They can happen when I'm having a really good time, they can wake me up in the middle of the night, they can appear out of nowhere when I'm in the safest and happiest of surroundings. Equally, I can be drowning in work, personal issues, family drama, relationship problems- and I'll be absolutely breezy. In this sense, I don't really need anyone to afford me any special treatment or put in place any preventative measures to make sure I don't have panic attacks. It's just rearranging furniture on the Titanic.

For me, there really is no point trying to predict it or prevent it. It’s like being Scarlett Johansson’s publicist attempting to predict when she's going to say something terrible and trying to prevent it. It's going to happen anyway, it's just a matter of when and how bad it's going to be- then it's a case of implementing damage control. What will she say today? That she believes Woody Allen? That she should be able to play a disabled black trans war veteran? Is she going to announce herself as the White House’s new Chief of Staff? We’ll cross that bridge when we come to it and make an action plan when we know what fresh lunacy it is we’re dealing with that day.

That's not to say that there are no situations I know with complete clarity will 100% bring on a panic attack. There are a few circumstances that I can and do avoid, but mostly it's quite random. It's something I think would take a lifetime to understand- and even if I somehow got an entirely comprehensive grip on my current rendering of panic disorder, by this time next year I'll have a lot of different hydra heads to contend with. It'll be a whole new beast by then.

Also, one time I had a panic attack at Disneyworld. If that doesn't illustrate the fact that there is pretty much no rhyme nor reason to panic attacks, I really don't know what could.

4. It's almost never visible so you will feel like a fraud

Despite being an illness that massively affects me physically, there are very few outward signs that I'm having a panic attack unless some of the more extreme symptoms have appeared. Chest, arm, neck, head and stomach pains are quite easy to hide. It's not as dramatic and visible a thing as film depictions of panic attacks would have you believe. I almost wish sometimes they were- the fact that the only constant telltale sign of panic I carry is my shaking hands makes me feel like people must think I'm lying about how much my illness affects me.

If I take time off work or cancel plans with friends due to panic, I really worry that they won't believe it's serious enough simply because they can't see it. Not only that, but they can't see it in a way that they probably think they should be able to. I don't adhere to the prevalent image of Panic Attack Sufferer. I think people have a heightened awareness of invisible illnesses and disabilities now, but panic disorder isn't seen as an invisible illness.

The physical symptoms are tough to get to grips with, but let's not forget that it's a mental health condition. I mentioned earlier that when I have chest pains in the night I will force myself to stay awake so I won't die- this is the sort of irrational mental spiral I fall into. Pair that with what can be quite extreme physical symptoms and you've got yourself an absolute hoot of an evening. The fact that I will keep myself awake, overdo it at the gym, self medicate or isolate myself due to completely ridiculous illogical spirals means that the physical symptoms will get even worse. The mental spirals are even less visible than the physical symptoms. The visibility and recognition of my panic attacks rely entirely on me saying "I'm having a panic attack."

5. Panic disorder isn't who you are

This sounds like something from a “Sorry You’re Mentally Ill” greeting card, but it's something I definitely could have done with hearing a few years ago. After my first panic attack, I changed my behaviour dramatically in order to get myself better. I don't regret making changes, but I do regret denying myself things that had made me happy before simply because I thought they might be detrimental to me. Things like going out with my friends was completely off the cards because of arbitrary rules I created for myself. I really wish I had tried to see if those things that had made me happy before could still make me happy, rather than shutting them down. I wish I had spent more time working out reasonable boundaries rather than burning bridges.

I started to define myself through my illness and base every decision I made on it. It absolutely took over my life and became my defining characteristic. I think it turned into a self-fulfilling prophecy. It's taken years, but I'm really glad to be at a point where my attitude is this: give it a try, you can always go home.

I thought for a long time that having panic disorder made me boring, unpredictable, unloveable, a bad friend, a bad person. I thought I was a physical manifestation of an illness and absolutely nothing else. Fundamentally flawed. Now I actually think having panic disorder makes me the opposite of boring. I'm more empathetic as I have more of an understanding of how my actions can affect others, I know what to look for in friendships and relationships and (weirdly) I'm more cheerful and breezy about situations when I'm not in the midst of an episode. I appreciate times where I'm neither depressed or panicked in a way I couldn't have before because I don't know when another episode will occur. I make the most of the time I have where the fog has lifted.

I'm not saying it's a good condition to have- I could definitely do without it. If it went away I wouldn't miss it. It's changed me in many negative ways, but also many positive ways. There's no way I could have seen it this way even a year ago. It's something I've been able to see more recently because I'm so much better than I was then. It's no longer my defining feature and I've managed to reintroduce myself to myself.

6. No one gets to define your recovery for you

There's not much you can do to improve your mental health without someone somewhere shaming you for it, even indirectly. I can't count the amount of times I've been asked when I will get to come off my medication, or the times I've felt I had to lie to a manager to get time off work for treatment. And those are the indirect cases of shaming I've been on the receiving end of. When I am directly shamed for my recovery or treatment strategies I am always shocked but never surprised. The way I see it now is that I might as well just do what I need to do. Throw a lot of shit at the wall, see what sticks and follow that path.

Medication shaming is sickeningly prevalent. Why is it anyone’s concern when I will “get to come off it”? Why should I? It's not something that I even think about. Often friends will say nothing about the medication I'm prescribed, but then if they experience a mental health problem themselves they won't accept medication because they "don't agree with it." It's often said that medication prescribed for mental health conditions turn people into zombies- side affects of dissociation obviously occur, but to say this to someone who is verbal about their experiences with SSRIs, SNRIs and benzodiazepines is irresponsible. It makes me think you see me as a faded person, like the printer’s run out of ink. It's your choice not to take medication, but please don't make me feel bad for taking something that allows me to be the person I am.

Despite so many social measures to normalise psychiatric help, I can tell you with certainty that we are not there yet. Oddly enough, this actually works both ways- people will shame you for having therapy and they'll shame you for not having therapy. I've been asked countless times why I'm not currently receiving psychiatric help and I'm told regularly that I should be. I don't usually take issue to unsolicited advice because every time I have been given some, it has never come from a malicious place. It's when the word “should” creeps into play that problems arise.

The word “should” needs to be struck out of all conversations about mental health. Replace it immediately with “could.” Honestly, please work on this. It's something we’re all guilty of- it's not necessarily a nasty thing to say but it does plant the seed in someone's head that what they're doing is wrong. And they’re probably already in that frame of mind, you don't need to compound it for them.

You don't get to dictate anyone else’s treatment or recovery strategies. We can make suggestions, gently guide people to resources or ideas- but the word “should” never needs to be used. You should stop saying it.

My blog is a mixture of posts about mental health itself and my own coping mechanism- pop culture and my own little niches within that. By niches I of course mean Nicolas Cage revenge movies. My strategies might be seen as a bit leftfield, but I've spent a long time working out through trial and error how I can distract myself from panic attacks and pass the time while I wait for a bout of depression to pass. Sure, you're unlikely to have Mandy prescribed to you on the NHS (despite my many strongly worded letters), but taking time out to watch a film, read a book or engage with something I enjoy works for me.

I'm lucky (or unlucky I guess- I don't exactly want my friends to have mental health problems) to have people around me who talk to me about their experiences with mental health and tell me the ways they can find respite. The strategies are wide in scope and it's amazing the diversity in coping mechanisms I have heard. Twitter is really good for this- there is a huge network of mental health advocates who are really open about their experiences. Platforms like Twitter have democratised discussions surrounding mental health and it's certainly contributing to breaking down the social stigma of mental health- and, on a more micro level, the different ways people deal with experiencing poor mental health. It's educating people that there are endless ways to deal with it- it's now the shamers who are shamed.

I wish that in that initial few days of experiencing panic attacks someone had told me that I don't have to accept all types of treatment. If I don't like the sound of something suggested by a doctor, I can say no and discuss other options. If I think someone is giving me bad advice, I don't have to take it just to show that I have. I don't have anything to prove and there's no need to jump through hoops. I never should have worried so much to be seen as being proactively trying to "get better"- I've learned that people will pour scorn on whatever strategy I choose so I might as well do what I want.