Understanding and accepting where you are at

“The difference I have noticed is that this time Jo has just accepted things before events like school provision collapsing and leaving a job would have resulted in self-blame, loss of confidence and rapid deterioration in mental health.”

My husband commented on this during my review appointment with my psychiatrist at the weekend. The psychiatrist picked up on it as significant, and it crystallised my thoughts and feelings that I have coped well with the turbulence of the last few months because I have learnt to accept that, in my words, “it is what it is.”?

In this newsletter, I want to unpick how I have reached this point. How did I reach the point where I can now accept external events and their impacts more rationally and logically?

It can be easy to say – you must accept things and move on – but I have found that this is something that my autistic and bipolar mind has often struggled to do despite my good intentions. For me, this journey to understanding and acceptance started two years ago when I finally accepted that I needed to try talking therapy again.

Reaching rock bottom

Two years ago, in January 2023, I had finally been convinced that finding a new therapist was essential if I wanted to break the cycle of recurring long periods of depression.

This was after a rather fractious review meeting with my psychiatrist in late December 2022, where I was complaining that the medication I was taking appeared to be having a negative impact, especially following an increase in dosage in September, and I was still experiencing significant depression despite challenging circumstances previously now having settled.

The autumn school term had gone surprisingly smoothly for both children, and I felt like we had gotten over the worst of the impact of grief over losing my sister-in-law to cancer 6 months previously. “There’s no reason why I should still be depressed”, or words to that effect. I left the session angry, frustrated and upset.

I had been looking for the magic bullet. I thought there must be a different medication suggestion that would ‘fix’ the depression for good without me having to engage in therapy, which I had tried a few times previously but not found effective long term. Several conversations over the following weeks did manage to convince me that I needed to do something, to at least try therapy again to see if it could help, and I also reached a mutual decision with the psychiatrist to reduce my medication dosage.?

What makes a good therapist?

From my experiences over the years, I have realised that a suitable match and connection between therapist and client is the most crucial element to successful therapy. Someone may be a good therapist, but the key is:

1. Looking for a good therapist for you, given your needs, prior experiences, and their expertise and specialisms.
2. The timing of receiving the support can also be crucial. Long delays when you are already suffering and struggling can make it harder to benefit from the support once received.
3. The length of time support is available. Too often, support is deemed complete as soon as someone feels better. However, given that mental health problems can often re-occur, reaccessing support promptly can be essential to building on that initial successful work.

I have been working with my current therapist on a weekly basis for just over two years. I am fortunate that our family finances allow us to afford this level of intensive support. More recently, because of the longevity of our work together, I have benefitted from working with someone who has sufficient knowledge of my circumstances and who has observed for themselves the changing patterns of my thoughts and moods.

Whilst this may not be necessary or desirable for many people, I don’t think there would have been a shortcut for me. I have had very challenging circumstances in the last few years, some of which I have had little control over. That has come on top of existing challenges that I wasn’t even fully aware of when I started working with my therapist. I was considering the possibility of being autistic, and my husband had been convinced for a while that I was bipolar (a suggestion I rejected at the time). Still, these weren’t confirmed until several months into our work together.

The challenges of finding a suitable therapist

Finding a good match is no easy feat; you will have minimal choice unless you can pay privately. If available via the NHS or possibly your employer via an Employee Assistance Program (EAP), you will usually be assigned someone, and the treatment is often restricted to a set number of sessions.?

Unfortunately, mental ill health does not always obey such restrictions. From my perspective, it is short-sighted and counter-productive that as soon as someone appears ‘better’, that support is often terminated with no easy means to re-access support should problems reoccur. However, some support is likely better than none, so getting access to whatever you can secure is worth it.

Being able to afford private therapy gives far more choice and control. Still, I recognise this is an enormous privilege and will not be accessible to many who could benefit from it.

Past experiences with therapy shaping future considerations

I had talking therapy via the NHS back in the late 2000s, and that was very helpful when provided by the Primary Care Mental Health service, accessed via my GP. I saw them intermittently for several years and found them helpful support. I also did a group CBT therapy course run by that service, which I found interesting. It gave me some strategies that I still use today. By chance, that therapist was a good match for me.

I had a private CBT therapist for a short period whilst waiting to get back on the caseload of the Primary Care Service at one point. Whilst I found that initially helpful, moving my mood from very low to improving, I found it too prescriptive and less useful as time went on.

Long waiting lists for support also mean that you don’t necessarily receive the support at the right time for it to be most effective. The last NHS counselling that I was able to access was in early 2018; the counselling sessions did not start until 3-4 months after I had reached crisis point and referred myself. At that time, I had begun to improve, and therefore, the counsellor was seeing me, and I was remembering past events, thoughts and feelings rather than receiving assistance and being able to work through them in ‘real-time’.

Later, in 2018, when my mental health dipped again, I had a private counsellor for just over a year. That was ok from the point of view that having someone to talk to at that time when I was particularly isolated was beneficial, but when my mental health dipped again, I found it ineffective. In hindsight, that counsellor was not a good match for me.

My previous history of talking therapy not being that effective in helping me manage my recurrent depression had made me reluctant to try again. Plus, there was the financial side of things to consider. From my personal experience, the support for my mental health available via the NHS had significantly deteriorated over the previous decade. The support I had been able to access initially via the Primary Care Mental Health service was much more helpful and less restricted before IAPT (Improving Access to Psychological Therapies) came in.

Prior experience did, though, at least make me more careful in choosing my next therapist. I knew what I had found helpful and what hadn’t been effective. I had an initial phone call with two therapists who used the same therapy rooms as my psychiatrist, and both spoke highly of each other. The second of those then suggested a different therapist they felt might be more suited to what I was looking for – which was essentially something more action-focused than just talking/listening but not as directive as pure CBT (cognitive behavioural therapy). After an initial trial session with the third therapist, a pluralistic therapist, we agreed to work together.

The challenge of engaging a therapist when depressed

When I am feeling depressed, all the above discussions, reflections, and conversations that were required to get me to this point of finding and securing the services of a new therapist took an enormous amount of effort. When depressed, my mind works slowly, and it has a demotivating and de-energising impact. Simply looking up therapists on a website and plucking up the courage to send an initial enquiry email takes much building up to, even though, in reality, the actual looking and sending of an email only takes a few minutes. Perhaps this is where autistic tendencies impact too – deciphering therapist’s qualifications and specialisms, understanding the language used, taking that step to reach out with an enquiry, have I put myself across correctly, what will they think of me? It all takes a significant amount of mental exertion, and there is a lot of demand avoidance.

This is why imploring people to ‘reach out for help’ at their lowest is a double-edged sword. Yes, reaching out for help may be helpful and bring relief, but the demands it imposes may be too much for someone to manage when at their lowest ebb. When severely depressed, you start to lose hope that anyone can help. The more episodes of ill mental health I experienced, the worse this feeling got. I felt like I had tried to reach out and help myself but still found myself repeatedly back in the situation of being depressed and struggling again.

When I am depressed, I just want someone, anyone, to come and save me. If you have never experienced depression, then this may be hard to understand. This is why reaching in and sitting alongside is so essential. Only I can make the changes and engage in support that might be available, but assistance to find that and receive support and encouragement along the way can be essential.

For more information on the different types of therapy available and finding a therapist in the UK then, the British Association of Counselling and Psychotherapy (BACP) has valuable information - https://www.bacp.co.uk/

The benefits of talking therapy

Despite the reservations I have expressed above, talking to anyone independently can have enormous benefits if they are a qualified and suitably registered counsellor. A counsellor is trained and practised in listening in a non-judgemental way. They have no other investment in any discussion, no ulterior motives. They cannot be hurt by anything you say about how your revelations could break a family member or friend, and they will not benefit or be impacted by any changes you decide to make. This unique position will not be available to anyone you know as family, friends, employers, or co-workers. Not because those people wouldn’t want to help and support you but because they inevitably have their own needs and agendas, which may not always align with yours.

Although the therapy I had done before did not help me to manage my mental health effectively over a long period, each depressed episode and therapeutic intervention did reveal things to me that I would otherwise have been unaware of. It helped me through challenging circumstances in the past. It gave me insights into myself and often strategies for coping with different experiences and feelings. So, if you can access therapy via the NHS or an EAP, please use these options. They may not be the whole answer, and you may well need appropriate medication or additional support in other ways. Still, overall, there should be some value in giving it a try, especially if you are experiencing your first bout of ill mental health.

Those with more complex needs, a history of trauma, or other medical complications may need to take more care in the type of therapy they access. Neurodivergent folk should also be aware that some mental health therapies may not have been suitably adapted for neuro-difference-affirming care. Talking with a GP or other professionals involved with you to talk about options would be best. I'd like to point out that reaching out for recommendations from others with similar circumstances, either online or in person, could benefit you. You can also now search for therapists and coaches who are neurodivergent themselves -

https://neurodivergentpractitioners.org/

https://ndtherapists.com/united-kingdom/

For specific guidance relating to autism and mental health, please see the recently published Autism and Mental Health guide from the Royal College of Psychiatrists - https://www.rcpsych.ac.uk/mental-health/mental-illnesses-and-mental-health-problems/autism-and-mental-health

How did therapy help me to understand and accept where I am at?

In January 2023, I started working with my therapist, who is not neurodivergent as far as I’m aware but has always been very open to learning about autism and exploring with me how that impacts me and my mental health.

I was not at my lowest point, which I had probably reached during October-December 2022. I had recently reduced my medication dosage, which had some positive impact of making me less numb and zoned out. I was still depressed, though, and the calm that had surrounded my children’s education and general well-being in the autumn term was swiftly disrupted shortly after we started working together.

Over the weeks and months that followed, as my therapist learned more about my circumstances and recent history, he helped me appreciate the understandable impact recent events had had on me. It was only through talking through all the different life events and circumstances of the past 3-4 years, and the last 12 months in particular, that I realised just how much had happened and how much my mind had had to cope with.

This is where having someone independent who could hear me talk about what had happened and reflect that what I was experiencing was, in many ways, to be expected helped enormously. It allowed me to reflect on those experiences and consider their impact on me and my relationships at the time and how they still impacted me.

Before I had the time and opportunity to describe what had happened via therapy and reflect on how that made me feel, I didn’t realise the significance of the enormous storms that I had experienced, nor had I been able to see where waves had overcome me because of external events. Those closest to me had lived through the experiences with me, but I didn’t share all my feelings and thoughts with them because that just wasn’t in my nature. I tend to look out for others first and avoid offending, putting my needs aside. On the occasions when I did try to prioritise myself, it tended to come out all angry, upset and wrong, resulting in arguments and causing more hurt for myself and others.

From early 2020 through to early 2023, I experienced:

• Coming off anti-depressants after being on them for a few years on 1 March 2020, not great timing given COVID-19! At the time, being on medication bothered me and was evidence of me being broken; now, I have a very different view. I would have to go back on medication in the summer of 2020 when a Mental Health First Aid training course highlighted to me just how much I was suffering again.
• Being fully open about my struggles with my mental health from early 2020, something I had hidden for over a decade, with my wider family and friends. I wrote about my experiences on social media and even wrote about them in a compilation book - Ignite Female Changemakers.
• COVID-19 impacted me in various ways: loss of work on a couple of occasions; children out of school and home-schooling; the physical separation from our parents during the first lockdown in particular; holidays and other activities cancelled; health issues impacting family and friends, and suffering bereavements at a time when being with others was highly restricted; difficulties transitioning the children back to school.
• My sister-in-law, Helen, was diagnosed with cancer in late 2020 and received a terminal diagnosis in early 2021. This was the most significant of all the events in terms of knock-on impact and the stress it put on my closest relationships and, subsequently, my mental health.
• Autistic traits were separately and independently identified in both children in spring 2021. Coinciding with me entering a hypomanic phase and undertaking a house move, building renovation project and founding Actually Education CIC (a not-for-profit venture focused on mental health and neurodiversity resources for young people) all within the space of a few months.
• Experiencing an unusual fainting (syncope) episode in December 2021, resulting in a trip to A&E to rule out a stroke and being referred for checking of possible seizure. Whilst I recovered quickly after that day, it resulted in me being unable to drive for 3 months while everything was checked out.
• In March 2022, I secured a new office-based part-time job that involved working significantly more hours than I had in recent years. This job significantly boosted my confidence but put much pressure on my time and probably contributed to the burnout I experienced later in the year.
• In May 2022, Helen's health started to deteriorate rapidly. By coincidence, we also got some Early Help for the children in the form of a Family Support Worker around the same time, so I was also in the middle of dealing with school issues and progressing referrals to CAMHS for both children.
• Helen died in mid-June 2022, and I supported my husband and prioritised his and others' needs as he assisted with arrangements afterwards. I was hypomanic for a time, dealing with paid work, school issues for the children, and doing much voluntary work after the departure of two of the original Directors of Actually Education and attempting to recruit their replacements over the summer of 2022.
• My mental health deteriorated again from late August 2022 onwards, reaching a crisis around October when I had to step back from day-to-day involvement with Actually Education to prioritise family and paid work. The decline continued until Christmas.

Understanding how events impact me

In December 2022, when I went for that review meeting with my psychiatrist, I presented things resolved and sorted in terms of external events and their impact. We had gotten through a difficult time, and things were improving objectively, but I was still struggling in the depths of depression. What on earth was wrong with me?

Undertaking the talking therapy over the last two years has helped me to understand the impact of grief and that, particularly the loss of Helen on all of us as a family, was and continues to be huge. It impacted all my closest relationships and put a significant strain on them.

My husband has always been my anchor and most fantastic support during my periods of ill mental health. Now, he was dealing with his grief, alongside supporting his mum, brother-in-law and nephews, and maintaining a stressful and demanding full-time career. I was initially hypomanic, in an organising and sorting phase, dealing with practicalities on various fronts.

When that initial involvement with others and the need for immediate action tailed off, I struggled to deal with my grief; our children’s needs seemed ever-growing. I worked part-time in an office while also trying to maintain and find funding for Actually Education. It is no wonder that I, and my relationships with those closest to me, suffered under the strain.

Understanding my triggers and what I want and need

These recent events haven’t occurred against a blank canvas. I was already dealing with a severe mental illness (bipolar type 2 diagnosed in July 2023 but symptomatic since around 2016). I have been autistic since childhood but did not consider that a possibility at all until 2021, and I did not fully identify with it myself until May 2023. I was navigating obtaining support for my neurodivergent children, whose educational experience has been challenging since 2020 and has deteriorated significantly since the spring of 2023. I was suffering grief and losses in other ways, including the loss of other loved ones in the wider family.

Perhaps most impactful for me over the years in terms of impact on my mental health is when I am unsure of my status and role in life, uncertain of what I need and want. When I lose confidence and belief in myself and my purpose, that tends to impact my closest relationships negatively. That affects my ability to access their support to help me identify my role and purpose when needed.

As a teenager and young adult, I coped reasonably well when I had my academic talents and achievements to draw comfort and confidence from. As a new mother, I coped reasonably well, especially when my children were under 5. I was the primary carer and worked part-time. Once my children were school-age and theoretically less dependent on me, the pressure for me to become something else, to establish a new role or career, became too much for my mind to handle, and the depression returned.

One of the first questions my therapist explored with me in early 2023 was what I want and need. I honestly couldn’t identify anything that I wanted or needed! I just wanted not to be depressed anymore and to be happier, but I had no idea how to achieve that.

Therein lay a big problem for me in my relationships with others. I couldn’t communicate my needs and wants to others if I didn’t know what they were myself.

It has taken a lot of talking and unpicking to understand what I want and need. Then, I did a lot more work on how to communicate those to others and understand others' wants and needs to meet them better. Therapy over a long period, and even initially from the outset, has helped me identify things that trigger an overwhelming emotional response in me. Being overwhelmed meant I was either shutting down, withdrawing and isolating myself or I was highly irritable and argumentative – both responses were causing significant issues in my relationships with others.

Previously, I would have described myself as calm and rational, not prone to visible emotional outbursts, except on rare occasions when I could get outraged over seemingly innocuous poor customer service. That had changed in recent times after the events of the previous few years had made me and those around me much more emotionally unstable. ?

In our weekly sessions, I recounted small events and occurrences from my daily life. We identified common recurring triggers and worked on a few different strategies I could implement. Much of this focused on how I interacted with those close to me and what was impacting those relationships.

Will I always need therapy?

I have continued with weekly therapy even during the longish period now since April 2024, when I have felt mentally more stable and balanced. This is because so many external events continue to impact me, and I know that I need that weekly space to offload and process what is happening in real time rather than allowing everything to build up inside. I find having someone independent but who has a thorough understanding of me and recent events, the background to situations I am talking about, invaluable.

Outside of therapy, I talk more now about my thoughts and feelings with my husband and my parents and through the safe spaces of the peer support groups that I attend. Writing and talking about things in my therapy sessions helps me formulate and process what I am feeling and thinking and how that is impacting my behaviour in different ways. That aids my communication elsewhere.?

Together with my therapist, I can identify some patterns of thinking and behaviour and work to modify any which may not be beneficial to me. I have learnt to listen to and trust the judgement of my therapist, husband and mum a lot more when it comes to assessing my mental health state. This means we can spot signs of me veering towards either depression or hypomania in the early stages when it is easier for them to reach me and for me to make necessary adjustments. They have learnt to be more direct and assertive with me, as this is one thing that I identified hadn’t necessarily happened in the past. ?

Understanding and exploring being autistic and bipolar is an ongoing process, and it is something I couldn’t explore at all when I was depressed. I see the support I have around me now with close family, peer support, psychiatrist and therapist as being long-term fixtures in my life for the foreseeable future. I may not always require as much intensive professional support as I need currently. Still, my mental health is always something that I feel I will need to actively manage to stand the best chance of maintaining as much balance and stability as possible.

I have also learnt the hard way that life will always throw spanners in the works whenever there appears to be any sense of pattern and predictability settling. I am now going with the flow as far as possible. I try to accept that things out of my control are just that. Therefore, I focus on how I react and respond to those external factors and concentrate my efforts and thoughts on what I can control or influence. This seems to have a positive impact on how I feel about myself.?

Changing the world on my terms

In 2022, my husband implored me to concentrate on our family instead of trying to change the world. I didn’t really get where he was coming from at that point; I thought I needed to change the world first to benefit my family.

Now, I have recognised and put all my efforts into focusing on what I and my family need and trying to effect changes that need to happen. Hopefully, these small, micro, and local changes will also change the world.

About the author

I am Joanne (Jo) Feaster, a late-identified autistic and bipolar woman. I started self-identifying as autistic in May 2023 and was diagnosed with bipolar type 2 in July 2023. I am married and live in Leeds with my husband John and my two exceptional children, both of whom were diagnosed in late 2023 and early 2024 as autistic and ADHD.

I write to aid my mental health and to share my lived experiences as an autistic and bipolar woman and parent carer of my neurodivergent children. I subscribe to the social model of disability and the neurodiversity paradigm. I see our strengths, positive qualities, and spiky profiles just as much as I recognise the barriers we face from society.

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