Posted on October 10, 2021
‘MENTAL HEALTH IN AN UNEQUAL WORLD’
As I’m sure many of you know, today is World Mental Health Day and the theme, chosen by the Mental Health Foundation, is ‘mental health in an unequal world.’ WHO seems to be building it around the pandemic, rather than as a problem of its own, but from what I’ve seen in the newsletters and on the social medias of many mental health charities and organisations, most seem to be following the lead of the Mental Health Foundation.
According to the Mental Health Foundation’s website: “2020 highlighted inequalities due to race and ethnicity, sexual orientation and gender identity, and the lack of respect for human rights in many countries, including for people living with mental health conditions. Such inequalities have an impact on people’s mental health. This theme, chosen for 2021, will highlight that access to mental health services remains unequal, with between 75% to 95% of people with mental disorders in low and middle-income countries unable to access mental health services at all, and access in high income countries is not much better.” It goes on to say: “Many people with a mental illness do not receive the treatment that they are entitled to and deserve and together with their families and carers continue to experience stigma and discrimination… The stigma and discrimination experienced by people who experience mental ill health not only affects that person’s physical and mental health, stigma also affects their educational opportunities, current and future earning and job prospects, and also affects their families and loved ones.”
Statistics provided by Mind (x)
I have my own experience with the mental health system – which I do want to touch on – and have heard from many others about their experiences but I wanted to read into the research around these inequalities further, both to get a better factual understanding and to put my own experience in context (beyond an anecdotal one). The research is sporadic at best but here are some of the statistics I found…
ACCESS TO MENTAL HEALTH CARE
From these statistics, it’s clear that far too many people aren’t getting the support that they need.
INEQUALITIES IN ACCESS TO TREATMENT (x)
These statistics clearly show the disparities in the availability of treatment, more supporting evidence for the statement that the Mental Health Foundation is making with the theme for this World Mental Health Day.
YOUNG PEOPLE
This research all indicates that young people in particular are being let down by the health care system.
SECONDARY [LONG TERM] CARE
The statistics show not just that the need for mental health care is increasing but the need for long term mental health care is increasing but that it’s also very difficult to access.
HIDDEN WAITING LISTS (x)
“A study of 513 British adults diagnosed with a mental illness also reveals the damaging consequences that hidden waiting lists – the wait between referral and second appointments – have on the lives of patients living with severe or common mental illness.”
It’s clear that, beyond the difficulty of even getting into the mental health care system, once in it, the process of actually getting the support you need is much too slow – so slow in fact that it’s exacerbating the mental health problems that those waiting are seeking help for.
Now I want to look at my experience of getting support for my mental health…
Since then, I’ve developed near constant chronic pain throughout my body – something that’s obviously had a big impact on my mental health – but over a year later, I’m still waiting for the NHS physiotherapy and hydrotherapy referrals to go through. I have started Occupational Therapy and with the Pain Clinic (both through the NHS) but with the end of my Masters, I had to take a break because they were too painful and/or upsetting to manage alongside all the work. I’m starting back this week. It still bothers me that no one’s ever even tried to find out why the pain started though.
Almost six years after my ASD diagnosis, the Neurobehavioural Clinic called to offer me an appointment, to do what I had no idea. But at the end of the two part session, I’d been diagnosed with Hypermobile Ehlers-Danlos Syndrome and ADHD – aged twenty six – both conditions having gone unnoticed because no one had ever taken my associated problems (problems that have been there my whole life) seriously. They’re both conditions that often occur alongside ASD. The hEDS diagnosis would, in theory, push my physiotherapy and hydrotherapy referrals but, as I said, I haven’t heard anything and almost a year later, my ADHD is still untreated. My psychiatrist was happy to ‘move’ that condition to his care but the consultant I saw didn’t want that, which is especially frustrating because she’s so difficult to get in contact with.
And finally, I may be getting answers to another ongoing medical problem: severe dizziness, light-headedness, nausea, physical weakness, and breathlessness when I stand up for too long. We’ve been trying to get support around this for so long that I can’t even remember when it started. This too may well be related to my Autism and I can’t help thinking that it’s another thing that should’ve been discovered sooner.
All of these things have had a profound impact on my mental health and going through the agonising process of diagnosis again and again has left me wary, fearful, and angry at medical professionals. It’s deeply ingrained in me to be polite and respectful but it doesn’t take much to send me flying off the handle; I walk into each appointment feeling like a tightly coiled spring. I leave pretty much every appointment in tears at best, raging at worst. Because I’m so. freaking. tired. of feeling like this. Of feeling like no one believes me, of being made to feel like I don’t know what I’m talking about, of being made to feel like I don’t know what I’m feeling. I feel so worn down by the constant let downs. At this point, I think I’m only going back because I don’t know what else to do.
I have no doubt that social media will be filled with nice words and encouraging quotes today. But we need more than that. World Mental Health Day is about more than that. Or it should be. It should be about pushing for change and improvement. The Mental Health Foundation is absolutely right that the inequalities in the mental health care system need to be addressed but looking at these statistics, it’s also clear that the standard of care needs to be better. For everyone’s sake. After all, there’s very little difference between not getting any support and being on a list waiting years for support.
Category: about me, adhd, anxiety, autism, bpd, depression, diagnosis, emotions, heds, medication, mental health, ocd, research, therapy, treatment Tagged: accessibility, adhd, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, borderline personality disorder, bpd, camhs, cbt, chronic pain, dbt, depression, diagnosis, diagnostic process, eds, ehlers danlos syndrome, gad, generalized anxiety disorder, heds, hypermobile ehlers danlos syndrome, medical trauma, medication, mental health, mental health awareness, mental health care, mental health foundation, mental health in an unequal world, mental health in the media, mental health services, mental health stigma, mental health treatment, mental illness, mental illness awareness, mental illness stigma, neurodiversity, nhs, obsessive compulsive disorder, ocd, private health care, private mental health care, private psychiatric care, research, social anxiety, social media, statistics, stigma, therapy, wmhd, world mental health day, world mental health day 2021
Posted on March 21, 2021
A couple of months ago, I was diagnosed with ADHD. It was something I’d been thinking about investigating for a while but with COVID and the lockdowns, it was just something that got pushed to the back on my mind; I was busy trying to deal with my anxiety and depression. But then the opportunity to have an assessment came up unexpectedly and I decided to take it.
At the end of my hypermobility assessment, we were really just making conversation and the appointment was drawing to a close when I mentioned something offhandedly (I can’t even remember what now) and the specialist commented that she had worked with multiple individuals with ADHD who had similar experiences. I decided to bite the bullet and so I told her that I had done some research into the combination of ASD and ADHD and that I’d been thinking about whether I should be assessed. She said she could arrange that for me, which was more than a bit shocking: I’m so used to having to fight like hell for people to give me that sort of opportunity. So I took it gratefully and to my complete and utter surprise, I received a letter later that week with an appointment date in less than a month. I was expecting months of waiting. And it was also with the same specialist so that was reassuring since consistency is helpful for me, as someone with ASD.
In the time before the assessment, I was sent a handful of questionnaires used when diagnosing ADHD, which I filled out, but it was clear that they were old: aimed at children and the stereotypical presentation (they were old: I searched them and when they’d been created). But I filled them in anyway and we sent them back in preparation for the assessment.
I also did a load of research into ADHD in adult women (more extensive than I’d previously done). I collected articles, personal essays, blog posts, and anecdotes from social media that I related to or felt were relevant to my life, and compiled them into a document. It was a LONG document. That done, we emailed it to her, although it was so close to the assessment that I wasn’t sure whether she’d have time to read it before she saw me. I still thought it was worth sending and when we spoke, she did too.
When the assessment rolled around, I was nervous. I’ve had enough bad experiences at this point to at least be apprehensive before these things. But already knowing the specialist was helpful and she was really good. She hadn’t had a chance to read the document I’d sent but promised she would before making any decisions about a diagnosis. Then she spent about an hour asking me and my Mum (who was also present for emotional support and information about my childhood) lots of questions, the majority of them about my childhood, my experiences at school, and typical ADHD symptoms. Some of the questions were quite stereotypical but having said that, she was incredibly knowledgable and very aware of the fact that there are different presentations of ADHD, as well as how different everything can be when you have ASD in the mix as well. So even though she obviously had to ask the conventional questions, she did tailor her approach to fit my circumstances, which, of course, gave her a much more accurate picture of what I was dealing with and how I’ve been struggling.
After an hour – at the mid point of the assessment – she suggested we take a break: to move, have a drink, etc. But as soon as I tried to move, I got the blinding, electric shock like pain in my leg that I’ve been getting on and off since the first lockdown. It’s excruciating and nothing helps it; I just have to try to remember to breathe and wait until it fades. This can take from a few minutes to almost an hour and I’m always exhausted after so when the break ended and the specialist rejoined the online call, Mum told her what was happening (she was already aware that it was something I was having to manage since it had come up in the hypermobility assessment) and between them, they rescheduled the second hour of the assessment for a later date. I doubt I could have kept going but it was frustrating to slam the breaks on halfway through a process like that and then have to wait almost two months to continue. Having begun, I just wanted to get on with it and get an answer, one way or the other.
But when the second appointment finally rolled around, I wasn’t sure whether I was relieved or nervous. But again, the specialist was great. She’d read all of my research and she asked me a few more questions based on certain things I’d included or commented on. Then she moved on to her observations and her conclusions, based on the original questionnaires, the questions she’d asked me, and my research. She said that, because of the overlap between ASD and ADHD, it can be very tricky to determine which symptoms ‘belong’ to which condition but having said that, she felt that I did display enough symptoms and the impairment caused by those symptoms to diagnose me with ADHD Inattentive Type. And that’s that. Except, of course, it isn’t. But it is an explanation and it does point in the direction of potential help and support.
Initially it was pretty overwhelming; for some reason I found it really hard to process. I had to just sit with it for a bit – let the dust settle – and then, after a while, it just felt less intense. I could think about it without feeling overwhelmed by it. But, even though I had been wondering about it before the assessment, it’s still very new and I’m still learning about what this means for me and how I move forward.
So now I’m investigating various options in terms of support. Apparently group therapy is a commonly used method of supporting individuals with ADHD but, of course, that’s not possible at this moment in time. The specialist told me that the NHS are currently building an online hub of resources but, as far as I know, that’s not been published yet. I’m fortunate to already have a very good therapist so I feel well supported there.
That just leaves medication. Unfortunately, I can’t take the classic ADHD medications with my current antidepressant because they both potentially cause high blood pressure, which could be dangerous. There are other ADHD medications that I could take but they all appear likely to have a sedating effect, and with the sedation I already struggle with due to the Phenelzine, that just feels unbearable. I can barely get through the day without two Red Bulls and caffeine pills. I can’t imagine what it would be like if I was even more sleepy; I’m not even sure if I’d be functional. So that’s not really an option. I’ve been doing some research, talking to the various medical professionals involved, and thinking about it a lot. I’m still not sure what’s going to happen next but I’ll work it out. I just need to be patient and keep looking through the kaleidoscope; I have to believe that, at some point, the bigger picture will become clear.
Category: about me, anxiety, autism, covid-19 pandemic, depression, diagnosis, emotions, identity, medication, mental health, treatment Tagged: adhd, adhd diagnosis, adhd support, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autismadhd, autistic, autistic adult, diagnosis, diagnostic process, inattentive type, mental health treatment, treatment
Posted on February 23, 2019
I’ve now been taking various medications for four and a half years. It’s been a very mixed experience but through it all, I’m an advocate of medication because when we get it right, it’s incredible. A whole new person emerges, a person you’d forgotten you could be and that is the most amazing experience. It’s the closest thing to freedom that I’ve ever felt. But during that time, there have been a number of interesting and strange experiences. I don’t know if reading about them will be helpful to anybody but all of this stuff can be so scary if you think you’re going through it alone. So I’m putting it out there, just in case.
Venlafaxine withdrawal
I’ve written about this before but it makes sense to include it here as well. Because of several very busy days, I forgot to take my Venlafaxine and accidentally went into withdrawal. It started with an almost debilitating headache and on day four I woke up unable to think clearly. I couldn’t hold on to a thought: they were moving so fast that it made me feel dizzy and sick. On my Psychiatrist’s advice, I resumed the medication and I started to feel better pretty quickly although it took about a week before I felt like myself again.
Too much Pregabalin
At one point, I picked up my prescription and didn’t realise that the pills were at different doses than the previous prescription had been. So when I thought I was taking 150mg, I was actually taking 450mg. I woke up the next morning feeling shocking: I felt like my head was filled with cotton wool, the ground was moving under my feet like ocean waves, and my legs and hands kept twitching. It was awful and because I wasn’t aware that I’d changed my dosage, I was really freaked out. I ended up at the out of hours doctors because both me and my family were so worried. They didn’t find anything serious so we were left to wait and see but then my Mum realised what had happened. So that was a scary experience that I have no desire to repeat; I’m much more diligent about checking these things now.
Obsessive eating with Amitriptyline
Almost from the moment I started taking Amitriptyline, I was obsessed with eating, constantly thinking about what I could eat next, what it would taste like, what it would feel like. It was very much about the sensation of eating rather than being hungry. And the higher the dose, the more I wanted to eat. It was all I could think about. Seriously. I couldn’t think about anything else; I couldn’t function. It eventually caused me so much anxiety that I had to stop taking the Amitriptyline and try a different medication. I’d lost a lot of weight while on previous medications but I gained it all back while taking Amitriptyline and I found that very stressful and upsetting.
Taking Diazepam with Redbull
During a period of particularly high anxiety, I was taking Diazepam regularly throughout the day. The anxiety lifted but what was left was this overwhelming tiredness and sleepiness that had me falling asleep in the middle of the day, sometimes mid sentence. So I started drinking Redbull to keep myself awake and functioning. It wasn’t until a few weeks later – when I used Redbull to wash down the Diazepam – that I realised that it was the Diazepam that was making me so sleepy and that this was not something I could continue to do (not that Diazepam had ever been a long term strategy). I’d been taking it to ease the transition between medications and fortunately my anxiety started to go down and I didn’t feel the need to keep taking it.
Running out of Pregabalin
At one point, I ran out of the 225mg capsules, which didn’t seem like a problem because it was less than a week until my next appointment and we still had a load of Pregablin pills from earlier prescriptions, when we were still trying to get the dosage right. But then we realised they were 50mg capsules that you couldn’t split in half so I wasn’t going to be able to take my full dose of 225mg. I’d have to take 250mg or 200mg and the safer course was the latter. So I did several days on 200mg with pulsing headaches to remind me exactly why you take the exact amount you’re prescribed.
Too Much Magnesium?
This is speculation but not long after I started taking a Magnesium supplement, my mood seemed to nosedive. I’d been doing pretty well and was actually having bursts of what I think was happiness and so I’d felt able to add the (nutritionist) suggested supplement into my system. Nothing happened straight away and taking it became a habit but then depression started to creep in again. The only thing we could attribute it to – the only change – was the addition of the Magnesium. I’ve always been incredibly sensitive to stuff like this (I once threw up moments after taking a different supplement because it had too much copper in it) so I stopped taking it and within a couple of weeks, I felt more like myself.
Twitching on Pregabalin
The one real side effect of taking Pregabalin – in my experience, at least – is that it causes twitching, mostly in my legs but sometimes in my hands and arms too. It’s very disconcerting to not feel in control of my body and I really, really don’t like it. But as of now, Pregabalin is something I need to get through the day. It helps me manage my anxiety but if another option became available, I would jump at the chance to change, even with all the potential problems of switching medications.
I hope I haven’t put any of you off medication. These experiences weren’t fun but as I said, getting it right is worth it. At least I hope so.
Category: depression, medication, mental health, treatment Tagged: amitriptyline, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, diazepam, magnesium, medication review, medication withdrawal, mental health treatment, pregabalin, supplement, treating depression, tricyclic antidepressants, venlafaxine
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.