Tag Archives: Low Self-Confidence

Dean’s Weekend Stimulator

Good morning from a wet Friday in England. We have ten days of stormy weather arriving today! Still, the rain keeps these islands green and lush.

What are your plans for the weekend?

Try my 10 point plan this weekend and let me know how you get on.

1) Chat with at least one person, in-person.

2) Make a kind gesture for at least one person.

3) Spend at least 15 minutes outside, each day.

4) Listen to something you like for 10 minutes; from silence to heavy metal! From birdsong to water flowing.

5) Assess one room in your home and identify one change you can make, to make life easier.

6) Eat something you really like the taste of.

7) Put something in your home that smells nice; from a bowl of zesty citrus fruit, to a nice coffee pot. From a baking bread or cake to a fine fragrance jostick.

8 ) Touch things in your home to feel connected and appreciative; from a fluffy blanket or throw, to a plant. From your pet to your favourite outfit.

9) Look around your home. Are you and the things you appreciate and value about your life/your world represented there? From pictures of landscapes, to photos of happy memories. From objects that speak of you and your interests, to books that represent your heart and mind. Are you there, in what you see in your home?

10) Do one thing new or different. Break your routine. Try a new shop. Buy a different brand. Drive or walk a different route. Message someone you’d like to know more. Have a new experience. Change your appearance.

Try these 10 points and see how much more content you feel, emotionally.

Let me know how you get on! ❤️

Have a great, stimulating, explorative weekend.

(C) Dean G. Parsons. 2019.

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My Brave Friend.

I have a friend who has PD.
His body shakes so constantly.
I feel he has it worse than me.
His bravery is plain to see.

I feel a fraud without such shakes.
Ashamed of any fuss I make.
His body suffers seismic quakes.
I admire him for all he takes.

My friend is young to suffer so.
Yet he’s full of ‘get up and go’.
I’d like to spare him from this woe.
His DBS is due soon, though.

This guy’s as busy as a bee.
Central to his community.
Provider for his family.
The proudest dad you’d ever see.

My friend’s self-doubt was just not right.
This sincere man with pluck and fight.
I told him that his light shines bright.
Our hope for him soars like a kite.

With brain surgery very near.
You’d understand he has some fear.
I wish him all of life’s good cheer.
By many folks, he is held dear.

(C) Dean G. Parsons. 2019

Pick Your Fight Wisely

I was thinking, today, about the extra financial costs that come from being a person with a disability.  I had received a small catalogue of helpful mobility items and useful gadgets that help with tasks that were once so simple.  For example, battery powered jar openers, tin openers and bottle openers as well as gadgets that help with fastening and unfastening buttons and zips, in clothing.  There are so many very helpful items, a few of which I have been using for the past couple of years, already.

It occurred to me that I was building up a list of around twenty five more of these helpful aids and that I was getting excited about buying them, in a way that I used to get excited about buying new clothes or items for leisure and entertainment!  How did I become someone who would get excited about treating myself to a new walking stick?!  This is a surreal realisation but I regard it with humour and I respond to it with a knowing smile.  Not only did this realisation surprise me, but so did the almost £250 fee for these items, should I decide to buy them.  Thank goodness that, in the United Kingdom, we have Personal Independence Payments to support the cost of being disabled.

Brilliantly designed; everything from a special key holder that doubles as an aid to turning the key in the lock of my front door, a small key that opens cartons of fruit juice on days when I cannot twist the cap, a slider that goes on the outside of a tube of toothpaste and which squeezes the paste up the tube for me, a tea bag squeezer for the moments when I cannot do that myself, a holder for playing cards because holding cards can cause cramping and there can be grip problems, special grips that you can place around pens and pencils for days when my hands cannot maintain the precise guide needed for writing or drawing and even a clampable handle to go on the edge of the bath, to help me on days when I struggle getting out of the bath.  

I will purchase all of these over time for, unfortunately, I do have the need of them.  Not all of them every day, but some of them every day.  What I need varies from day to day or even hour to hour; depending on how my symptoms manifest.  Parkinson’s is one of these diseases where you do not truly know what difficulty you will face beyond as little as the next three hours.  Having helpful gadgets, aids and devices is, to me, good sense.

There are, of course, many stalwarts who like to ‘soldier on’ without buying any helpful tool to make their life easier.  Purchasing such a thing would, in their eyes, be an admission of defeat; an acceptance that they are disabled.  I love a good fighting spirit in anyone but, personally, I always like to choose my fights wisely.  Why make life harder for ones-self when that is unnecessary?  After all, ill health delivers the real fight; the battle for survival. 

No, for me, I would much rather conserve my energy where I can and, instead, use every bit of my energy to fight the bigger battle for maintaining my quality of life.  Why spend fifteen minutes struggling to open a jar or to get out of a bath when a helpful device enables you to achieve your objective nearly as quickly and efficiently, as you once could achieve yourself?

To any reader who may be disabled now, or in the future, I would recommend that you provide yourself with any helpful tools, aids, devices and gadgets that you can.  These will enable you to relatively swiftly carry on with your task, rather than for you to face burning up your valuable reserve of energy, and emotional resilience, as you fight to unscrew a lid!  Stubbornly refusing to accept your new reality is not, in my view, valiant.  It is not sensible use of your time or energy.  In fact, such resistance is not only futile, but it is almost always guaranteed to lead to some form of frustration.

While your ego battles with the label and the harsh reality of disability, your resistance is more likely to push you into denial and depression.  Think about how your disability affects your self-esteem and self-confidence.  You may need to talk about this with someone?

What are your views?  Are you, like me, someone who accepts the limitations that disability causes and, while I always push myself hard initially,  someone who proactively seeks a solution from disability gadgets?  Or, are you someone who ‘soldiers on’ in a struggle that causes you to feel wiped out and frustrated after fighting through every task but who sees using devices and aids as an admission of defeat?

I would find it hard to ever leave myself in a position where I may be in a low mood or frustrated state when there are solutions.  In fact, I simply do not.  I would find it unacceptable to act in a way that leaves me feeling any low mood, frustration or even depression due to not focusing on solutions.  That would also be unfair for those around me.  Accepting disability and ill health is not easy, but creating unnecessary difficulty when there are in fact solutions, and ending up depressed and frustrated, must surely be much harder to bear?  Something that is unnecessary.           

Perhaps the nature of Parkinson’s Disease is that, being largely a hidden illness, using devices and helpful aids becomes the visible evidence that we are disabled and for some, therefore, too uncomfortable to display?  Acceptance may be a step too far for some.  Perhaps the fact that I am so open about being a person with Parkinson’s has removed much of that potential discomfort and has enabled me to, instead, focus on solutions? 

If you meet me, you will simply meet a person who uses a walking stick.  Behind the scenes, I have all manner of helpful gadgets and gizmos!  These help me to be enabled, rather than disabled; for which I am grateful.  Gratitude beats depression, any day.

(C) Dean Parsons. 2018.

 

 

 

Yes, You Can Do This

When life does not go your way.
When your world falls apart.
When your outlook is grey.

Yes, you can do this.

When trouble lurks at your door.
When there’s no way forward.
When the outcome looks poor.

You, you can do this.

When your self-belief is low.
When there’s no solution.
When there’s nowhere to go.

Yes, you can do this.

When you have been rejected.
When you feel all alone.
When you feel neglected.

Yes, you can do this.

When you feel the pain of loss.
When your dreams are shattered.
When you don’t give a toss.

Yes, you can do this.

When you feel completely lost.
When you don’t know which way.
When the warmth turns to frost.

Yes, you can do this.

For all that you are inside.
For all that lies ahead.
Good days will calm the tide.

Yes, you can do this.

 

(C) Dean Parsons 2018.

 

 

Taking a Meaningful Risk

“Depart from discretion, when it interferes with duty.” – Hannah More.

One of the aspects of being a person with Parkinson’s, that others may not consider, is just how difficult it is to tell others that you have Parkinson’s; particularly those closest to you.  For some, the decision to disclose the diagnosis can be an agonising experience.  Who to tell?  Why tell?  Who not to tell?  How to tell?  Endless evaluation as to the pro’s and the con’s of doing so, or not.  For others, it can be straightforward and there are many more who exist somewhere between the two options.

That there is an option at all, is something important.  Nobody has a right to know, right? Ah, well maybe your spouse/life-partner?  Your parents?  Your children?  Hmmm…who else do we feel is in that beloved inner-circle that ‘ought to know’?  Is that even correct?  Do those closest to us have a right to know?  Many would say yes but many would argue not.  Then, what of duty and responsibility?  What of honesty and trust?  This can become an ethical minefield for and against an individual’s right to complete privacy.

So, what goes on in the head of a person with Parkinson’s, that this ethical debate even needs to play out?  I can only answer from my own experience, by simply saying that the immediate concern is that of consequence.  What happens if I disclose that I have Parkinson’s Disease?

As a co-facilitator of Parkinson’s Road support community on Facebook, I asked about  this very question and it was interesting to see just how many people had not told some/all people in their lives that they have Parkinson’s.  Additionally, there was also feedback that many people with Parkinson’s just do not know how to explain their illness to those who know little or nothing about it. How do we find the right words?  What capacity does the person we are telling actually have?  We, with Parkinson’s, can often struggle to understand it ourselves!  How will people react?  What will change once I disclose?

I could create a list of reasons why we might not disclose to anyone at all and certainly why we might only disclose to a select few.  Not least of all reasons is the fear that we may be judged and then treated differently.  In particular, this seems to be the fear when people consider revealing their diagnosis to an employer.  Will I be understood?  Will I be supported?  Will I be treated badly?  Will I be excluded?  Will I destroy the opportunities that are otherwise ahead of me because now I may be seen as impaired or unfit?

There is no clear answer to any of these concerns, considerations and questions.  Sorry.  If you were thinking that I may be able to offer a pearl of wisdom that just makes it safe and okay to go ahead and disclose, I cannot.  What I can do, however, is tell you what I have done and how it worked for me.

I told everyone.  Initially, I spent a few days telling those closest to me.  I did this in-person where I could and via message online where I could not.  I didn’t categorise who I would tell beyond simply my own awareness that those closest to me had been on my journey of trying to find out what was causing my symptoms, for such a long time, that it would simply have been wrong not to tell them.  Plus, these people are in my life actively and so know when I am unwell or struggling; there would be no way of hiding that I have an illness.

Knowing that those closest to me would be affected by my illness and its impact, I decided that it would simply not be right or fair for me to exclude them from knowing.  They would need information and, potentially, support.  They may need to get that support from people close to them; their own friends, family members or work colleagues.  Soon, it felt like revealing to anyone created a domino effect that would lead to, or even require, others to be informed.

For me, the logical thing to do was to simply ‘come out’ as a person with Parkinson’s.  I’m a great believer in just naming things and then getting on with it.  I am who I am (yes, okay – that was nearly a well known anthem!) and it’s far less complex just to state it and then get on with it, than worry about who I may or may not have told.  This was not an unfamiliar scenario to me and I did not want to ever have to live in fear of judgement, ever again, based upon being in some way different.

Once those closest to me were made aware, I put a post on Facebook and simply announced my diagnosis to everyone else.  That was it.  Job done.  Anyone not connected with me on social media soon came to hear the news, via word of mouth, from those who were.

There have been many different types of reactions.  Nobody has been unkind and for that I am grateful.  Some people do comment on the fact that I am so open about having Parkinson’s.  I believe that by being ‘out’ you can give others strength to be open, too.  By talking we can educate, break down taboos and make society safer, more understanding and more compassionate.

I talk about Parkinson’s, sometimes, to help raise awareness.  I write and I blog about Parkinson’s for the same reason.  I co-facilitate, and write for, a global support group for people with Parkinson’s, and caregivers, because I have the skills and the insight to do so and it is a way to contribute something to people who may be in greater difficulty than myself.

I found that, once I accepted that I have a disease which has no cure and which will only get worse, there was no way of getting away from the fact that this is a significant part of my identity. It does not define who I am, but it is a significant part of who I am.  If anyone truly wants to know me, then they have to know the Parkinson’s for it affects most aspects of my life.  I only want relationships that are meaningful and so this aspect of who I am has to be known for any relationship to be meaningful.

My point is that we do have to be brave and ready to be able to disclose that we have Parkinson’s Disease. In my experience, the benefits of being ‘out’ about it are far greater than the potential consequences.

I would add that, when people care for you, they will want to be a supportive part of your life and they will want to understand the real and full you.  If you decide not to tell someone that you have Parkinson’s, you are making a decision for them.  By doing so, you are potentially denying them the opportunity to be the support to you that they would want to be.  You would deny them the insight that makes the relationship meaningful.  Eventually, without the meaningfulness, would that relationship gradually become distant?

I think we do have a duty, to our relationships, to give the other person the opportunity to understand who we truly are.  It is a risk.  Conversely, not disclosing to those in your life that you have Parkinson’s is also a risk.

(C) Dean Parsons.  June 2018.

 

 

 

You Are Not Alone

“Shame derives its power from being unspeakable.” – Brene Brown.

As a co-facilitator of a support group and support community for people with Parkinson’s, I see that one of the most difficult aspects for anyone participating, is to disclose personal difficulty.  Whatever we may be dealing with, there may be a significant fear of judgement about saying ‘I’m having a tough day.”, “I’m not coping.” and even “I need help.”  Indeed, far easier to remain silent or to console someone else in difficulty, than to share something that reveals a weakness, right?  Stay out of the spotlight, so to speak.

Wrong.

I believe that holding on to your personal difficulty, for fear of feeling a sense of shame, is actually far more difficult, in practice,  than disclosing an uncomfortable truth.  You see, holding on to a difficulty means that there is little opportunity for progress or resolution.  By retaining it, nothing will be processed and progressed.  In fact, while the difficulty remains, it may also worsen.  Suffering continues.  We are more likely to feel alone.  We may also miss an opportunity to learn and to grow.

Some people see talking about their problem or difficulty as a weakness.  I believe that taking a risk to describe your difficulty with others is not only a sign of bravery, but that allowing yourself to feel vulnerable is a sign of strength.  After all, if something is easy, would it really have any value?  Is it not the things that challenge us, that have real meaning and worth?

As a Counsellor and Psychotherapist, and one who has run many couples, family and group therapy sessions, I can attest to the fact that the more people learn to speak openly and with their truth, the more people learn to let go of fear, anxiety, low self-worth, low self-confidence and the more we let go of things that might ordinarily serve to divide us.

In fact, the members of a support group or support community become kinder, less judgemental and more accepting of difference; focusing instead on what connects us to each other, rather than what may divide us.  This offers a person making a personal disclosure a sense of acknowledgement and validation; something so important.  If only we could all simply adopt this way of living with each other in society, right?

We can.

It starts with you.  The reader of this article.  Take that risk.  Share.  Let someone know what life is really like.  Tell someone what you struggle with.  Maybe even ask for help?  You may be surprised how willing people are to truly hear you and how willing someone may be to offer support and friendship.  That doesn’t mean you can ‘dump’ your problems on others and expect them to ‘fix it’ for you.  It means letting someone walk with you along your road, as you find your way forward.  It means no longer feeling alone.

We can take the values of a constructed support group out into the real world.  It just needs someone in each community to gently start a conversation with a friend, a neighbour or even that familiar face in the café or familiar person we say hello to each day as we pass by.  It just takes someone to say to their friend or loved one “I’m not okay.”

If you start that conversation, let me know how it goes.

(C) Dean Parsons. April 2018.

 

 

 

 

You Can Do Parkinson’s

One of the difficulties that people with Parkinson’s tell me about is their sense of frustration at the realisation their diagnosis has changed them forever.  I know this feeling, myself.  I too am well aware of the limitations this disease has upon my life and of how I will never regain my former good health and ability.  That is tough to accept, yet accept we must.

Quote:

“Life is a series of natural and spontaneous changes. Don’t resist them; that only creates sorrow…” – Lao Tzu.

Letting Go of What Was:

What I believe I am witnessing, within those who sadly sink into depression, is a deep sense of grief and loss.  This is caused by an unwillingness to accept change.  Typically, depression is often exacerbated by introspective thinking.  The cycle of thinking about ‘our lot in life’ serves as both a cause and an effect of depression.  In fact, one could sometimes question which comes first, the depression or the thought?  Nonetheless, the two become enmeshed in a vicious cycle with seemingly no way out.  That is, the belief can be that there is no way out. No hope.  A belief that the person one used to be is lost forever.  Destroyed.  Well, that is merely a belief and it is a belief that I do not hold with!

The Continuum:

You see, although I must now live differently to how I lived before, I still consider myself to be me.  There is a continuum.  The onset, development and diagnosis of my symptoms were not the end of who I was.  They simply represent a new experience that the person I am has to face.  As with all experiences, I will be affected and even changed by what I go through; but that is what each significant experience in life has always done to each of us.  We develop.  We adapt.  We change.  We grow.  Even in the darkest of times, and I do have days when I feel down, we can learn how to do well, to be the best we can be and to enjoy something within each new day.

Certainly if I dwell on no longer being able to hike, ride a horse, go kayaking, decorate my house or even just move without pain and difficulty, I am going to feel sorrowful.  That is why I choose not to dwell on those things.  Dwelling on them will not change them.  It is what it is.  That is called acceptance.  I have to look at each new day and think ‘What can I do?’, rather than ‘What I can no longer do.’

Becoming Solutions Focused:

Let’s take a significant example.  My career as a Counsellor, Psychotherapist and Clinical Supervisor.  I have had an amazing career.  I received, and still receive,  much recognition for my work.

Parkinson’s will soon take away my ability to work in my current roles.  What will I do?  I will adapt.  I know that because I have already made many adaptations to my working life; necessity drove that.

I ask myself ‘What can I do?’  How can I continue to thrive and do what I love?  I considered that question.  Here is what I came up with:

  • My body may shake in a way I can no longer hide, at some point in the near future, and my speech difficulties may get so bad that I cannot counsel clients effectively.   So, I have to accept that counselling people will come to an end.  This may be just months away or it may be a year or two, but it has started.  What I can do, however, is offer people my skills through writing books, making podcasts online, making audio books and holding webinars online.  I get to continue helping people, but I can do it in a new way.  I can still make use of my knowledge.
  • As I already have a hobby, in writing, and a position with ‘Parkinson’s Road’ writing articles, then maybe I can build a career in writing?  I am thinking ahead…not by looking at more loss, illness and negatives (dwelling on what I cannot/will not be able to do) but by proactively building new foundations for a new direction and phase in life.  I chose to study for a Diploma in Creative Writing to earn myself some credentials, and develop my skills, in this field.  I am now half way through my fourteen month long home study course and loving it.

The Pay Off:

Where I could have focused my thoughts on how Parkinson’s has been continuously chipping away at my career that I worked so hard to build, and which I love deeply, I have instead focused on how to use what I know, enjoy and what I can learn to:

  • Enable me in my future.
  • Retain fulfilment by doing a different type of work but in the field that I love.
  • Have at least a potential to keep earning money.
  • Use my knowledge and skills.
  • Become skilled at something else I enjoy.
  • Develop my hobby into a craft.
  • Give me and my family a sense that I may still grow and thrive.
  • Provide myself with a new sense of hopefulness and positive mood.

The key is to adapt your mindset, first.  You have a new reality and so you must let go of expectations, of yourself, that were based upon what you used to be capable of.  You have to base your expectations reasonably upon what you are capable of today.  Also, don’t discount all the knowledge in your head, your skills and your hobbies.  These may be the key to living life in a new way, going forward and building on them.

Solutions as Outcomes:

For example, until last year it was reasonable to expect me to mow the lawn once per week in summer, before my disability worsened.  I cannot do this now.  It is reasonable that I still see getting the lawn mown as my responsibility.  Rather than nearly kill myself trying to mow the lawn and rather than become depressed that I can no longer mow the lawn, I focus on the fact that a solution is needed.  I arranged for a Gardener to take over mowing the lawn.  I get to feel good because the garden looks well tended and because I lived up to my responsibility.  Instead of getting stuck in a negative mind set, I can feel a sense of achievement and, even better, while our Gardener mows the lawn, I have extra time to write and study. A ‘win win’, as they say.

I have also employed a Window Cleaner once per month and a Cleaner for inside our house once per week.  These are solutions that still enable me to feel that I am taking responsibility for getting things done.  That gives me back my sense of achievement and self-worth.  I have recovered an important feeling, that I would otherwise risk losing.

This solution-focused approach is the key to recovering yourself from the depression that could otherwise engulf you.  ‘What can I do?’ rather than ‘What I cannot do’.

I’d Like to Report a Theft:

I witness people saying “Parkinson’s has stolen my future from me.”  I ask “Where was this alternative future you expected, written and pre-determined?  Is it not simply the fact that we just live our lives in the present and that we are simply living our stories?”

Ego vs Reality:

Do I believe that another future had been designed for me? No.  This is simply my life playing out.  I am currently forty-six years of age.  It was only ever my own ego that might believe a different type of future, one free of Parkinson’s, was awaiting me.  This is simply who I am at forty-six.  There is no other version of me waiting in the wings.  This is just who I am today.  It is just my story playing out.  It is only the ego speaking when people say “My future has been taken from me.”  No, you actually still have a future and you now just have to decide:

  • Will I focus on ‘What I can do?’
  • Will I focus on ‘What I cannot do?’

Answer carefully, for one answer leads to contentment and the other to sorrow.

 

(C) Dean Parsons.  March 2018.

Deciding to Accept Parkinson’s

“The more I expect, the more unhappy I am going to be.  The more I accept, the more serene I am.” – Michael J. Fox.

One of the most common difficulties that I see, in other people with Parkinson’s, is frustration.  Indeed, I see this in myself at times, too.  Frustration that comes from having expectations we cannot fulfil.  We may expect to be able to complete the most simple of tasks. We may expect to have the energy to go from one task straight on to the next.  We may expect to be able to do the basics of our functions; talking, conversing, chatting, walking, eating, getting dressed…the list is endless.  The frustration occurs when we are unable to achieve something in line with our expectations.

When I respond to people, who ask me how can they possibly live with such constant frustrations, I tell them that they must change their focus from being frustrated at the task they could not achieve.  I inform them that their expectations that they can complete the task come from their former self.  Before Parkinson’s took hold, they were more able bodied and able minded.  So, their expectations ‘fitted’ with who they were and what they used to be capable of.  Parkinson’s has since developed and so now those usual expectations no longer ‘fit’ who and how they are today.

Here is the good news:

There is a choice.  The choice is between continuing to hold on to long held expectations, which ‘fitted’ the person before Parkinson’s manifested, or to change/update those expectations to ‘fit’ what the person is capable of today, with Parkinson’s.

Once we understand our choices and what they mean, we merely have to decide which choice we will choose.

This part is important.  You will note I have emphasised the word ‘decide’, in italics. You see, we may know we have choices and we may choose between them, but we need to first reinforce what we choose by making an informed decision about what the choice means for us; ie. what are the benefits and consequences.  If we just choose, without having first explored what the choices mean, then we may choose something that does not match the important life decisions we truly need to make.

Here is what the person has been doing:

  • The person has expectations that they can perform ordinary tasks.
  • The expectations were developed when the person was healthy and able.
  • The person has since developed Parkinson’s.
  • Parkinson’s has caused the person ill health and disability/reduced ability.
  • The person wishes/needs to carry out their tasks, but has difficulty/cannot.
  • The person becomes distressed, upset and frustrated.
  • This is because they now feel that they fail at their expectations.
  • The person becomes increasingly unhappy, depressed and loses hopefulness.

Here is what the person could decide to do instead:

  • The person has expectations that they can perform ordinary tasks.
  • The expectations were developed when the person was healthy and able.
  • The person has since developed Parkinson’s.
  • Parkinson’s has caused the person ill health and disability/reduced ability.
  • The person re-evaluates what they are able to do and how best to do it.
  • The person replaces their old expectations with new expectations based upon their re-evaluation of their ability as a person with Parkinson’s.  This means they recognise that Parkinson’s has changed their ability.  This is called ‘acceptance‘.
  • The person wishes/needs to carry out their tasks, but has difficulty/cannot.
  • The person adapts the task/how they go about their task or they ask for help.
  • Then a) The task has been changed and then completed or b) The person has changed how they approach the task and then the task is completed or c) Somebody else has helped with the task and the task is completed.
  • The person feels satisfied that, although things have to be different because they are a person with Parkinson’s, they can now meet their new expectations and feel satisfied and fulfilled.

From here, life will start to feel better.  The frustrations will be reduced and replaced by a sense of accomplishment.

Parkinson’s does cause continuing decline; to varying degrees depending on the individual.  Each person with Parkinson’s must go through the above process of re-evaluation, whenever they experience a significant decline in their ability.  This is not what we want to have to do, but if we accept the benefits of doing this, we can be much more content as we go on in life.  This is a way to remain empowered to either continue completing our tasks or empowered to co-ordinate that they are somehow completed.

(c) Dean Parsons. February 2018.

 

When Identity is Withdrawn

Identity is a significant subject for people living with a chronic health disease/illness or disability. For some, the chronic health problem or disability is with them from birth.  In those cases the person’s identity, as being someone living with a chronic health problem or disability, is more likely to be formed earlier in life.  Here, the person has to encounter the reactions of people as they go about their life.  They are faced with a society which has a construct designed for those who are not chronically ill or disabled, from an early age.

Hopefully, the person will have developed a clear idea of their own identity in childhood or adolescence and many of their robust coping skills will be in place by the time they reach adulthood; just as is ideally the case for those without chronic illness or disability.

For others, who may be blissfully going about life without chronic disease/illness or disability, the unexpected onset of chronic ill health or disability can be a trigger for major anxiety.  This is because the person’s existing  sense of their own identity, formed throughout childhood and adolescence, may suddenly no longer fit their new reality.  Much of what they knew about being who they are may no longer apply.  A process of introspection and re-evaluation is likely to take place as the person adjusts to their new diagnosis.

I was quite lucky.  Although I was only diagnosed with Young Onset Parkinson’s Disease last year, my symptoms started just over twenty years ago and so I have been through my own introspection and re-evaluation over that time, while being subject to tests and monitoring.  I did not have to face a more sudden or unexpected change in my sense of my identity and I long suspected what my disease would turn out to be.

Witnessing Identity Theft:

In getting to know people with Parkinson’s, through online communities, I have witnessed the ordeal that some people have to face when their suspected, or even diagnosed, Parkinson’s turns out to be something else.  For example, some people do not respond well to the medication they take called Levodopa and this can determine that their illness is not, in fact, Parkinson’s Disease.  Some people are, instead, then diagnosed with ‘Atypical Parkinsonism Syndrome’; an umbrella term for a number of diseases that have some symptoms that mimic those of Parkinson’s Disease, but which are not caused by Parkinson’s.

Can We Expect the Unexpected?

How difficult, for some, to have grown into adulthood without any sense of chronic illness or disability and to then be diagnosed with an unexpected and life changing disease, illness or disability.  The amount of self-exploration and re-valuation to adjust to the identity of a person with a chronic illness or disability, and all that represents, is a deep, often emotionally painful and challenging process for many.

To be someone who achieves that and then finds that there was a mis-diagnosis, to lose the identity you had just worked so hard to adjust to and then to have to accept another new diagnosis is incredibly hard, and even de-stabilising, for many.

Feeling Lost:

In such cases, some people may withdraw from medical support and may even hide from key personal relationships while they are overwhelmed and in fear of a whole new set of circumstances.  They may enter into a state of confusion, mistrust and deep anxiety; their mental state exacerbating a range of physiological, psychological and behavioural symptoms while they remain in flux or in denial.  This can lead to chaos and breakdown developing in all areas of the person’s life.

If you experience this, please seek help and support. urgently  Your medical care lead is the best person to contact but even speaking with a family member, friend, colleague or your family Doctor can be enough to alert people that you are in difficulty.  There is help available for you.  You can come through this difficult experience.

Certainly, counselling and psychotherapy can be very helpful during such times of identity change or crisis.

(c) Dean Parsons. February 2018.

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