Psychology of Chronic Illness: Making it Normal [Part 4: Identity]

Welcome everyone thank you for joining
us for the fourth in a series of six installments on the psychology of
chronic illness making it normal this is brought to you by the Bateman Horne
Center in conjunction with myself Timothy Wyman I’m a licensed clinical
social worker providing counseling services for Utah and Arizona residents
tutela counseling and also a member of the chronic illness community I’ve
formulated these presentations because I found through my own personal experience
and as well as their meaning other people how there was such a gap between
patients having providers and professionals communicate to them what
is normal to go through and so I wanted to create these it’s kind of that with
the aim of kind of bridging that gap so that maybe you don’t have to feel
abnormal for too long or out of control with what you’re going through this is
separated into six different as previously alluded to six different
presentations we covered the development and phase of phases of chronic illness
anxiety depression today we’re going to cover identity with future presentations
covering relationships and religion spirituality and meaning making a
context being chronically ill we’d love for you to join us for each one’s if you
find value in today’s presentation that being said we’ll dive right in
looking at identity and chronic illness so I had this image I just thought this
image was perfect here for originally coping with chronic illness as well as
this quote in one qualitative study that I reviewed related to chronic illness
one of the participants said open quote anger mind’s going all the time you’re
reflecting how the hell did I come to be like this because it isn’t me so I
didn’t the body is the foundation for all areas of our life work play love sex
and romance our family duties absolutely if you’re having
shutdown in your body or difficulty with your body it’s not you know illogical
that there’s going to be decline and issues related to these different
means of life and we structure our sense of self around all these things than our
roles and if we can’t live up to particular roles or how we think we
should live up to them it can really disturb our sense itself I think so in
one qualitative or in one study of studies so meta-analysis this was in
1998 researchers analyzed 292 qualitative studies of those with
chronic physical illness the all these studies were published from 1980 to 1996
and from this study researchers came up with what is called the shifting
perspectives model of chronic illness this model open quote depicts chronic
illness as ongoing continuous and ongoing continually shifting process
where people experience a complex dialect between the world and themselves
patients bounce back from having the illness in the foreground coping with
the difference of the world around them and seeking to access a sense of self
and well-being in the foreground where the self is dictating focus is the
dictating focus and the source of identity rather than the disease so this
is an ongoing process throughout being chronically ill how much does the
disease define who you are and what you do and how much do you or your inner
self the things that you find are your intrinsic values your passions etc one
person put it this way having a chronic illness means more than learning to live
with it it means struggling to make control over
the defining images of self and one’s life similar similarly one researcher
found he coined them symptoms related to chronic illness as biographical
disruptions meaning that you have your story of your life and then all of a
sudden your illness manifests or an exacerbates and it puts you in a
different trajectory than you had previously thought you were headed in or
had wanted to go there researchers have found that illness changes do not
necessarily have to be wholly unexpected to be experienced as disruptive so you
could still know that it’s coming and it can still cause a lot of distress and
difficulty in terms of react sesang lists all
a solid consistent and stable sense of self so there are four general terms
that become important talking about illness identity I have these four terms
here and I’m going to introduce and define them for you the first is
engulfment now engulfment is the degree to which chronic illness dominates a
person’s identity in daily life individuals completely define themselves
in terms of their illness which invades all domains of life at the expense of
other self assets secondly we have rejection rejection is neglecting the
illness and trying to avoid thinking and talking about it with others thirdly we
have acceptance which is accepting as the illness as part of your identity
without being overwhelmed at fourth we have enrichment richmond is benefit
finding her stress-related growth as one author put it quote in contrast to the
broader concept of benefit finding or post-traumatic growth enrichment
specifically refers to positive changes related to one’s identity
hence it refers to the degree to which chronic illness enriches one sense of
self enables one to grow as a person so we’re bouncing between these four
things when we’re dealing with identity related to chronic illness this can be
important in the in the context of like acceptance for example research has
indeed demonstrated that acceptance was related to less illness symptoms whereas
concepts related to engulfment were related to more symptoms but not
surprisingly it’s hard to know you know the chicken before the egg kind of thing
are people engulfed in their illness because of difficulty coping which
creates that engulf memory or they engulfed in their illness because it’s
off the rails and it’s just really disturbing life I come to find that I
really think that it’s bi-directional meaning that both are causing each other
certainly if you have more symptoms among disability problems you are going
to be more engulfed and at the same time the way we respond to that exacerbation
can even was further or not an interesting
finding in the research to related to this concept of acceptance where
hopefully we’re working towards acceptance in enrichment is that longer
disease durations is not necessarily accompanied more with more acceptance so
just because you may have had your disease for ten years it may not mean
that you’re more accepting so we really have to put in the work to facilitate
that acceptance and make it happen acceptance can be of primary importance
because if is related to less depressive and anxiety symptoms less illness
symptoms and pain reinforcing the importance of integrating illness into
our identity without making it our whole identity so we’re working towards that
acceptance that enrichment you can find perhaps if you’re having a darker time
maybe you’re slipping more into engulfment or more back into denial we
talked a little bit about some of this in our first presentation on development
and phases of chronic illness if you want to go back to the presentation you
can look at phase one and phase two the crisis and stabilization those can kind
of be more about engulfment and rejection and can be a part of the
beginning of our process in dealing with illness but again as indicated by the
research not necessarily some of us can get stuck in those areas if we don’t
have the proper help and do the proper things to pull through them to the other
side but how do we in the context of maintaining identity in terms of
solutions to build a positive self-identity we want to one we want to
grieve what is lost to us there couldn’t be some things that might be lost to you
forever so accepting about making peace with that and allowing yourself to have
all the feelings and thoughts that come without without it going into a place of
complete darkness that all is lost because so we want to make sure that we
do that secondly we want to actually you know what can we reclaim in new ways
if you loved I don’t know if you look we’re a dancer and you love dancing
maybe you can still go to dance concerts and find a way to validate that aspect
of who you are maybe you can’t go to all the ones you
want to but finding a way that you can you know once quarterly or something
along those lines we try to reclaim what we’ve lost in new ways and then
recognize as well what have we been able to keep what’s been congruent and
consistent throughout I know for me like education is a big value for me
education and growth and I can do that for my bed when I have really bad
episodes I can listen to podcasts or watch educational videos or things of
that nature so that’s a new way that’s a way of reclamation and continuity as
well and then a force can be finding new ways new hobbies new passions of
developing a new self that’s important to you and part of the chronic illness
process is that your priorities and values might switch or might change and
grow and being open and accepting to that that’s just part of life I think I
think back to one of I can’t remember who said but I there was this quote that
I knew have in which the person had said the person who looks at their life the
same way they do at 50 that they did when they were 30 years old has wasted
20 years of their life so we should be seeing things in new ways our values and
priorities should change with different life experiences different stages of
life if we can be open to that and see it as normal and even if it’s last point
enrichment as good there could be good from this that can be helpful for us
having an identity that continues similarly to this is Buddhist psychology
I talked about this anxiety and depression Buddhist psychology can be
particularly helpful because there’s the focus in Buddhist psychology and attack
in detaching from things detaching from roles and particular identities and
think that your identity is actually just your timeless awareness in any
given moment you can be aware of what’s going on and that’s your continuity of
being it’s a little deep it’s a Hedi but if you like that kind of
thinking additional positive benefits for some of these issues that we
continue to discuss related to coping with chronic illness so I wanted to next
I want to talk about personality attributes and chronic illness this
slide and this topic could have fit easily in depression and anxiety but I
put it in identity because if I define what personality is from psychological
terms personality is persistent patterns and thinking and behaving and feeling
the person that persists across different situations so in you know kind
of lay terms when we talk about types of people we’re talking about personality
when you say something like she’s this type of person or he’s this type of
person we can find the you know the other can be truth to that not always
sometimes we over generalize how fixed people are but there is some evidence
that people can have what’s called a personality after particular preferences
strengths and vulnerabilities and there is some research on that interaction in
dealing with chronic illness and disease and the first thing I want to talk about
this bullet point is the type a personality and hostility so what is the
type AE what’s a type a person if you’re unfamiliar with this this person is
usually what’s called highly neurotic neurotic in lay terms as used as a
derogatory term but it’s actually a clinical scientific term in psychology
and basically neuroticism is our sensitivity to experiencing emotions and
particularly negative feelings type-a personalities you can find words that
can suggest to type their personality or liked rigid controlling uptight
perfectionistic those are all kind of negative the positive can be high
achievers reliable organized those kind of descriptors can all be associated
with a type a personality usually type a person eyes are also
highly conscientious of their work details things of that nature now shown
that but if you are a type-a personality or
if you have a person eyelets more prone to express hostility maybe even as a way
to cope with your typing the research is showing that you probably will have a
hard time adjusting to chronic illness and it can suggest that it might be
helpful for you to get more support or help in that adjustment again I want to
make sure that we’re working in D stigmatized shame free zone like you’re
not bad for having that kind of a personality or tendency every every kind
of like cast the shadow so to speak strengths and weaknesses come with all
kinds of personalities and different situation calls for different approaches
and behaviors but by definition personality problems are when we’re not
adjusting our personality responses to a new situation so if we’re still
responding to the chronic illness with a type being kind of approach or hostility
that can that can cause problems for us for example in one study type e behavior
and hostility predicted heart disease onset and progression there really is an
interaction between how we think and cope with things on our physical the
physical manifestation of our disease and health problems so if we also look
at a second two type-a personalities and hostility it is there is some research
on what’s known as dispositional optimism and we’re all kind of have a
tendency to be fall on a scale of pessimistic to optimistic and some of
that appears to be kind of a name in terms of how quick you’re able to you
know look for the best case scenario and believe it’s going to happen and the
research shows that the more prone you are to have that dispositional
opposition or prone you are to engaging what’s called approach oriented coping
which we discussed in presentation on anxiety and depression this is a style
that is active and accepting of what’s going on and takes proactive steps to
deal with it it also is predictive of what’s called
effective social support notice that it’s an eighth effective meaning
emotional so people have just this issue Donghae
Optimus have tend to have more positive emotional support around them you know
most people like to be around people who are promote you know joy and happiness
and hope so that shouldn’t be too surprising it also can be related to a
reduction of disease related threat appraisals so you know that’s kind of
psychological parlance but in lay terms it means that these people typically
don’t see their disease as harmful which can again quiet the nervous system and keep our disease symptoms at a lower
rate and then additionally there is what’s known as the placebo effect now
the placebo effect is one of the most robust findings medicine and currently
in random controlled clinical trials often people have to show or it’s
desirable that they show that their intervention goes above and beyond the
placebo effect now what the placebo effect is is just our belief that
something’s gonna work positively and people just often need to believe that
and they can be given like a sugar pill and to have improvements in what’s going
in their help so there really is something to thinking positivity
believing the positive outcomes are possible and will happen so that’s a
brief overview today of kind of personality and identity as it relates
to disease if you’re interested in learning more and taking a deeper dive
here is a page of the references in which I drew some of this information
from we also invite you to join us for our last two presentations on the
psychology of chronic illness making it normal and you can find those by through
the Bateman horn website we thank you for your time and attention during this

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