Its
difficult topic to discuss, but one that needs a serious discussion, both in
the area of mental health, acute care and chronic illnesses. I stumbled across
an article yesterday that gave me pause to reflect upon the “Recovery Framework”
that is bandied around by mental health professionals, and indeed by myself at
times. One striking quote is as follows:
“The word “recovery” suggests that
people need to return to a “normal” state, rather than embrace their
differences. What does a person with bipolar disorder or autism need to
“recover” from? When people realize they are not their diagnoses, they can
start to find things that actually work to help them live successful and
productive lives. That’s hope, not recovery.” (Liza Long, 2015:
https://www.huffingtonpost.com/liza-long/5-reasons-i-wish-we-would_b_6502318.html)
She then discusses the differences
between chronic illnesses and mental illness – both in terms of stigma and then
subsequent “recovery”:
“… if people recover, why aren’t you
recovering? It must be a choice you are making, or something you’re doing
wrong. Some people tell you the medications you take are preventing you from
recovery. Others tell you that your choice to stop medication is preventing you
from recovery. Who is right? Hope is a universal concept that embraces a wide
range of possibilities. Recovery seems dependent on a prescribed set of
treatments that may not work for everyone… We would never apply the blanket
expectation of recovery to any other chronic illness or disability. With cancer
and autoimmune disorders, we use the term “remission” to describe a
life-threatening systemic illness that with luck and treatment has been stopped
in its tracks. With other chronic illnesses like diabetes, we talk about
managing the illness. But with mental illness, we expect people to “choose”
recovery, even when they are experiencing psychosis, or when their disease
steals their ability to make rational choices.” (Long, 2015)
Ms. Long talks then about the
concept of hope… What I have noticed is that when people focus on their
diagnosis and their limitations, this would seem to hold true – it psychologically
takes away the concept of hope. Moving further, how can one maintain a positive
outlook on life should one lose hope?
Ms. Mims (2016,
https://themighty.com/2016/12/focusing-on-positives-of-life-with-chronic-illness/
) discusses her journey of being diagnosed with Celiac disease and discusses
the initial feeling experienced such as “anger, grief, sadness, frustration and
fear. There may be tears, and there may be mourning… The thoughts flash quickly
through your mind: “But I can’t…”, “But I won’t ever be able to…”, “But now
I’ll never have a ‘normal’ life.” Interestingly however, her outlook is that
she perceives that these negative thought patterns have the potential make her
captive of her own mind, in this way she highlights the fact that she has noted
that some let the disease define them and it is there identity. She chooses the
opposite of that. In that way, while she struggles at time, she fights for joy
in her life so
she doesn’t become a captive of her own mind and her
identity remains separate to her di-ease.
So what are we left with? First, how
to regulate your behaviours and emotions and then how to move forward onto a
path of positivity and hope.
So in this way you need to be able
to think that these thought patterns that your behaviours and thoughts are
actually causing you harm, and test whether you can resist in these thought
patterns or behaviours. “Self-destructive or dysregulated behaviours provide
relief or even pleasure in the short-term – but ultimately get in the way of
living a life that feels satisfying and fulfilling.” (Wupperman, 2016
Psychology Today). One helpful avenue is to actually process your emotions at
the time Wupperman suggests so they do not continue to build into a virtual
pressure cooker waiting to explode. If not, it may become a repetitive cycle.
A useful way to think about moving
forward has been discussed by Ms. Mulder, a Psychologist who is living with a
chronic illness (2017:
https://thehealthsessions.com/lessons-learned-about-recovery-from-illness/
). Albeit, this is at odds with previous assertions about the divergent
terminology about “recovery”. Nevertheless, I believe it is up to the
individual to choose their own terminology to “fit” with their own journey in
order to move forward along their own pathway in life in order to promote hope
and positivity. Mulder’s seven steps are exceptional, simple and I believe can
be applied to most situations. It moves one from a situation of feeling
powerless to feeling empowered. That is a critical switch in thinking that must
be taken in many situations whether one is chronically ill, acutely ill or
diagnosed with a mental illness. Yet again however terminology is important and
thus I will simply say
a disabling
condition with ascribing or labelling further.
She suggests that one should decide
what recovering from this means for yourself: “The conventional definition of
‘recovery’ is too limiting for these people: it implies a fixed final
destination at the end of the road – one that many of us may never reach. So
what if we stop thinking of recovery as an all-or-nothing deal, but rather as a
continuum with many more stages, variations and dimensions than simply “being
better”? ‘Recovery’ can mean anything you want it to be: (small) physical or
mental improvements, a better quality of life or being able to do something you
couldn’t do before. Meaningful examples of this new version of recovery could
be being able to walk to the shops again, becoming more independent, picking up
your favorite hobby again or getting back to work parttime.” (Mulder, 2017).
Next, one must remember that it is a
long and at time a winding arduous journey: “Healing is not a linear process. …
There are many ups and downs along the way. Depending on your illness – whether
it’s curable or chronic, relatively stable or progressive – this process of
setbacks and personal victories can repeat itself multiple times. That’s
because ‘being healthy’ isn’t as black-and-white as it’s usually portrayed.
Most of us find ourselves in the huge grey area between optimally fit and
terminally ill. Even a healthy person’s immune system can be working overtime
to (successfully) fight off a nasty virus, and even a chronically ill person
can have a relatively good week. Your health fluctuates every day for as long
as you will live, constantly trying to find that illusive equilibrium... So
don’t give up too soon if you don’t notice any improvements straight away.
Recovery is a marathon, not a sprint.” (Mulder, 2017).
While I am unsure of the next one
(more of a terminology than anything) she discusses the fact that you can fight
for your recovery, whilst at the time accepting you illness. Arguably, fighting
means a battle and a battle means expending energy that one may not have.
Accepting your illness as well may make one resigned to the fact and then you
could lose hope. However she most poignantly says here: “Contrary to what you
might think, it is possible to accept your current limitations and keep
fighting for your recovery at the same time. Because facing today’s reality
doesn’t mean you give up hope for tomorrow. It just means you make the best of
the given situation in this moment, instead of forcefully trying to change
something that cannot be changed right now. It’s saying: “Apparently, this is all my body and mind are capable of doing right
now, and I will live life the best way I know how despite of my illness.” At
the same time, you can still take smalls steps every day towards a better
health, just without the constant struggle and disappointment of not being able
to live up (your) expectations. Focus on what you can control or improve, however
little that might be today, and find ways to accept the things you cannot
change.” (Mulder, 2017).
Finally Mulder suggests that one
needs to arrive at the conclusion that sometimes there is no end goal: “But
sometimes, no matter how hard you try, your body and mind just can’t (fully)
heal themselves. If there’s no victory,
is it even worth the struggle? Only you can decide that. But to me, it’s
not just the destination that matters, it’s the journey – basically, your life
– as well. What will you have done along the way? How much joy did you
experience? Were you able to achieve some of your dreams by striving? Did you
have less pain and symptoms – and therefore a better quality of life – thanks
to your recovery efforts? If you’re anything like me, knowing you’ve done all you
could have to get better, feel better, live life the way you wanted to can help
you learn to accept remaining limitations and disappointments.” (Mulder, 2017).
If we look at this in its entirety (terminology
aside) there demonstrates a lot of hope, a lot of positivity and very little
focus on the dis-ease itself. Rather the mind, body, spirit continuum and the
ability to self-regulate destructive behaviours and the cycles that can occur
that will eventually end up making one bitter, twisted and sick of their life
as evidence would suggest that leads to chronic depression and a multitude of
other co-morbidities ((Singer 2001:
https://www.ncbi.nlm.nih.gov/books/NBK43790/
). Changing habits takes a long time to occur (Evans, 2012:
https://www.huffingtonpost.co.uk/jules-evans/mental-health-recovery-top-ten-tips-for-recoveri_b_2165212.html
). Termed “Neuroplacicity”, work on developing your brain to develop those
hopes, dreams and goals into a serious of goals and then into habits and then
keep a journal to the document your progress (Evans, 2012). You may be
surprised at the results on what you have achieved!
In sum the take home message is to
change your habits, change your thought patterns and definitively choose to
think that the dis-ease does not define you as a person. Rather you are a
useful, contributing member of society that can go out and achieve what you
want to – you may just have to do it in a variety of creative ways that other
people may not. A final note is that becoming self-absorbed in your dis-ease
bodes no one any good. If you become the observer self, you will begin to
understand that everybody has problems,
issues and daily struggles and each person considers them just as important as
yours; this means you do need to think of others as well during this
journey (Evans, 2012). Optimism and social support is vital and also has been
proven to prevent a relapse in chronic depression, so I urge you to give this
serious consideration (Singer 2001). Without this, there may indeed spark a
pathway of self-destructive behaviours that will ultimately affect your health
(Wupperman, 2016). By focusing on positivity and hope and considering that this
is your journey, allows one to also develop empathy for others, consideration
for others and who knows, you may just move that bit closer to the goals you
have set yourself without even knowing it!
