I have a very strong focus on advocating for improved mental health, particularly for doctors. Aside from trying to do my part to reduce stigma and prejudice against those who experience mental illness, I am always looking for strategies that I, and others, can use to not just improve mental health, but to maintain it. After all, why climb a mountain only to fall off a cliff as you reach the summit.
Last weekend I had one of those moments of realisation that we sometimes have in life.
For those who don’t know me that well a bit of background will help. Last year I became a part-time wheelchair user, not long before turning 35 (which I still think is young). I have Ehlers-Danlos syndrome which, for me, means my joints are quite hypermobile. After losing 75kg of excess weight during an 18-month period, I developed a significant amount of muscle weakness. Given the stability of my joints is heavily reliant on good muscle strength and coordination, this became a big problem; my joints started dislocating more frequently and recurrent hip dislocations took a toll on my mobility. The introduction of a wheelchair came after careful consideration and we hoped it would reduce falls.
To an extent, using a wheelchair does help; clearly, I can’t fall over when I am not walking. But, as they say, “If you don’t use it, you lose it.” It became a choice whether I became more reliant on my wheels or worked harder to ‘stay on my feet’. It’s a love-hate relationship I have with my wheelchair: It is a blessing on days when I am in considerable pain or extremely tired, however, I am naturally inclined to run around, and it cramps my style. I’ve chosen to focus on option number two – ‘staying on my feet’.
Towards the end of last year, I was working very hard on improving strength and coordination to minimise dislocations and falls; but I wasn’t really getting anywhere. I was definitely more tired, and my joints and muscles felt well used: Despite doing everything I could with the exercise physiologist and a personal trainer, I kept on falling. For a few months I resigned myself to a permanent decline in mobility and was, to a degree, grieving that loss. My treating team (now changed) appeared comfortable with a lowered expectation of what my mobility status would be in the future. My own resignation to using my wheelchair most of the time didn’t last long; I am simply too stubborn. If there is anything I’ve learnt from growing up autistic with parents who always focused on my abilities, not my difficulties, it is that other people’s expectations of what you can or will achieve don’t have to limit you; and the limitation is often more related to how much you believe those assessments of your capacity vs the actual impact of any disability.
My wheelchair is named “Franklin” after the former American president Franklin D. Roosevelt who stood up out of his wheelchair and said, “Don’t tell me it can’t be done.” Matthew Wilder’s song “Break My Stride” crept up towards the top on my regular play list and I found myself humming “Ain’t nothing gonna break my stride… Oh no …I’ve got to keep on moving.” as an hourly mantra. And yes, I felt the need to put it on repeat while writing this blog post.
I booked in with a new physiotherapist who had some great reviews on google and whose practice offers tailored Pilates rehabilitation programs. I always thought Pilates was glorified pseudo-exercise where you play with those awesome giant exercise balls (I standcorrected). My new physiotherapist did something entirely logical, but unexpected. During her assessment she pulled out an ultrasound machine and scanned over each muscle that should activate and contract during each movement to assess whether or not it was pulling its weight. The logic behind this had me questioning my own competence for not asking someone to do this sooner. We have multiple muscles around each joint, and each muscle has a purpose; it makes sense to check they’re all working…
From all muscles we observed, only my gluteus maximus was doing any work on the left side, and the right-hand side wasn’t far behind. Those gluts were working very hard; compensating for all the others, to whatever extent is possible. No wonder when my unstable joints were facing possible dislocation I just kept falling. There was a single ‘safety net’ stopping dislocations, and if that safety net ‘failed’ down I went. There started a program that looks easy to an observer but is mentally and physically hard; it is focused on reactivating and retraining all those weak and atrophied muscles around my joints to start working again and do their job (that and training the muscles that have been doing all the work to ease up and let others have a chance). The program takes effort and concentration; Pilates with the physio, hydrotherapy with the exercise physio, personal training at the gym, daily exercises for at home… I’ve got sore muscles where I didn’t even know I had muscles (anatomy was definitely not my strong point in medical school).
The moment of realisation came while attend one of my favourite conferences. I stood up quickly while turning (high risk for me) and there was a notable wobble; the horrendous feeling right before I usually feel my hip pop out and fall to the ground. But I didn’t fall. I was stunned. Right at the moment when I would usually feel a complete loss of control in the joint, I felt something tighten and hold things in place and I was able to regain my balance without a dislocation or subsequent fall; the gluteus medius muscle kicked in and I saw the first tangible improvement from my new exercise program. A colleague noticed the wobble and said, “You nearly fell”. I paused while the reality of the situation sank in and then responded “Yes, I did nearly fall. But, I didn’t.” – that statement was as much for my benefit as theirs.
A subsequent review with my physiotherapist indicated that those muscles are starting to activate more when I try certain movements. I felt an enormous sense of achievement and pride based on a solid investment of time and effort into changing my mobility status. Now she is faced with being the ‘fun police’ at times while I enthusiastically eye off the more entertaining looking pieces of equipment in the Pilates gym; who wouldn’t want to play on a giant wobbly surf-board! (I’m told the surf-board may be in my ‘future’ dependent on further improvement).
Not falling over with a hip dislocation is a pretty objective measure of an improvement in functioning. But how to we measure things like this when it comes to mental health. How can I apply what I’m learning with my visible disability to the less visible entity of mental health improvement and maintenance?
The key things I can identify from my loss and partial (ongoing) regain in physical mobility is:
- Sometimes things happen that damage or weaken our safety nets; those things are not always in our control (muscles supporting already vulnerable joints became weak with rapid weight loss)
- If you don’t use it, you lose it (sitting in my wheelchair all the time was never going to improve the muscle strength and coordination around my joints)
- You absolutely do nothave to settle for other people’s expectations of what you are capable of; the older I get, the more I realise nobody else has the right to define the limits of what I can or cannot achieve based on their perception of my disabilities.
- Staying ‘on your feet’ requires multiple muscles to work; you need more than one safety-net, you need a team of muscles to keep those joints stable.
- Strengthening and retraining weak and atrophied muscles takes time, effort, strategy, concentration and commitment; you can’t just keep doing things the same way, you need to try new movements and learn new skills.
- Developing and training muscles might hurt a bit, especially at first.
- You have a right to feel proud of yourself for small gains, achievements and even minor progress. Use it to motivate yourself to go further and as encouraging evidence that you can improve.
Now let’s consider how all of this applies to mental health. My “uh huh” moment last night was while lying in bed, struggling to sleep. I was thinking about the sense of achievement and pride I felt when I realised that I had succeeded in beginning to improve certain muscle functions, and my physiotherapist confirmed the progress. Then, I felt confusion and guilt. Over the years I have invested countless hours into self-development, into strengthen my resilience, coping skills, mental health, communication skills, and emotional intelligence. I lay there wondering why I hadn’t ever felt that sense of achievement and pride when attending an appointment with a psychologist or psychiatrist (or someone else helping me work on improving my mental health).
In contrast to the sense of self-pride and achievement I felt with my physio this week, on many occasions my feelings when working on improving my mental health have been better described as shame and failure (even when I’ve made positive progress). Those negative feelings have certainly not been attributable to projection of negativity from the treating specialist (at least not in the context of my own private long-term treaters, in the public system I can’t say that’s always true). I pondered whether those negative feelings and the absence of a sense of pride and achievement were a possible indication that I have some unconscious prejudice towards mental health problems; I decided I do not. After careful consideration I recognise that perhaps my own feelings of shame and failure when faced with working on the improvement or maintenance of my mental health is a reflection of the rampant stigma that we still have in society towards individuals with mental health problems.
Somewhere along the road, to some degree, I have bought into that stigma and prejudice: I have allowed myself to feel shame and failure for even needing to ask for help for depression, anxiety and trauma. I have not allowed myself to celebrate small or big gains in mental health improvement and maintenance despite having invested significant efforts into those gains; I haven’t mentally allowed that because somewhere along the road I started believing the projected stigma that says “you are a failure if you needed to work on those things in the first place”.
This morning I can sit here and say that it is not true. Needing to actively work on strategies to improve and maintain your mental health in no way makes someone a failure. Having mental health problems does not make someone a failure. Small and big improvements in skill sets, coping strategies and independence should be celebrated with the same enthusiasm and gumption as gains in mobility. Now I am determined to approach my own mental health from that same perspective.
I do see a psychiatrist regularly, sometimes just to check in and update him, and other times to seek extra assistance in managing anxiety or depression. In the past, I have also spent many hours with psychologists working on coping skills, emotional intelligence, self-awareness and communication skills. In my private time I regularly seek out resources for self-development to improve resilience and ensure I can maintain my mental health. Doing those things, and gaining benefit from them, does not mean I was weak or defective in the first place.
Here’s how my checklist is going to translate into mental health improvement and maintenance:
- Certain events and factors in life can cause insult/damage to our mental health. I’m going to acknowledge those things when they pop up and understand that if something has acted to damage my mental health that I may need to invest extra time into it to improve my mental health and bring it back to a point where it is being maintained. I am also not going to view myself as a failure from now on when something external impacts on me negatively; requiring that extra effort.
- The skills and tools I develop to improve and manage my mental health I am going to deliberately choose to practice even during times when I seem to be travelling along just fine; because if I don’t, they won’t be there when I need them to stop me from ‘falling’. That means having a support network in place, knowing myself well, maintaining a healthy life balance (including exercise, good diet and sleep hygiene).
- I will not accept other people’s projections and assumptions as to what I can or cannot do based on their knowledge of my mental health history: Other people do not get to define my limitations and capacity (especially not based on stigma/prejudice).
- Identification of a variety of skills that I can use to improve and maintain my mental health is going to remain a priority. I won’t be focusing on just one avenue to protect this important part of who I am; I’m going to deliberately explore options that may seem less appealing but will give me extra safety-nets when those insults to mental health occur.
- The time I invest into developing these skills, and applying them in my daily life, is going to be something I view as important as my ‘daily 30’ (of exercise); it cannot be viewed as a waste of time, or an optional extra. In order to maintain health you have to invest into it. Perhaps I will call it my ‘daily 30 for mental wellbeing’.
- Finally, I will call myself out on any occasion in the future where I am self-critical for needing to take time to manage or improve my mental health, or for needing to ask for someone else’s assistance or advice in managing it. That commitment is about actively living out my belief that mental health issues should not be treated any differently to physical health issues; I am going to celebrate the gains and improvements the same way I celebrated not falling over.
For me, realising that I had let other people’s prejudices towards mental health impact on my own perceptions of personal attempts to self-care seems like a critical step in moving forward in the future. I hope that in the future fewer people buy in to these negative views on mental health improvement and maintenance so that as a society we can be mentally healthier and happier.
The Good Doctor 