I’m told that I’ve coped well with my disability – I’m not sure if that’s right or not but I set out below my approach to coping with the challenges that come from living with a disability.  If you find some of this useful then great – if not that’s fine too.

The main elements to my approach are the three P’s – Be Positive, Pragmatic and Practical.  This means having a positive midst, dealing with things sensibly and realistically with practical action and a results-driven focus.

Ill try and provide more details of this below which can provide real examples of how I do this.  But first some background on me.  I have a genetic condition which was first diagnosed over 20 years ago.  My condition has slowly deteriorated over time and now means I need a wheelchair and assistance in performing everyday tasks.  I’m a qualified chartered accountant and worked in industry for over 20 years in many demanding high-level positions in large global organisations. 

This history has several key implications.  I have had time to adjust to my condition, accept it and anticipate and plan for its progression.  My career developed many skills sets such as strategic planning, project delivery, financial planning, complex problem solving and getting things done in large organisations.  All of these have been very useful to me, for example, in navigating the government benefits system!

1. Positive Mindset

This is a very tricky characteristic driven by many factors such as your personality and life experiences.  However, it is something you can develop or learn over time.  Research has shown that people with a positive mindset are generally more successful and happier, so the upside is proven to be significant.  Here are some practical ways to get there:

A. Expectations Management

Having realistic expectations can be crucial because this can be the benchmark for driving your judgement on whether things are going well or badly.  Let’s take a trivial example, if you were told that when you toss a  coin you should be able to guess the outcome 100% of the time but you do it and get a 50% accuracy rate then you’re going to feel disappointed.  Why?  Because your expectations were too high. If your expectation had been 50% and that what’s you achieved, you would be happy.

B. Monitoring & Correcting Your Internal Dialogue

We all have a voice in our head which talks to us all the time – it’s totally normal and you can hear it now as you read this – it’s essentially our thoughts.  However, these thoughts can get stuck in negative thinking patterns.  You need to challenge the unhelpful thoughts using critical thinking and also being careful to use words which don’t re-enforce those views. 

For example, when things go wrong your inner voice might say “oh great, why does this always happen to me and not other people?”.  But let’s critically examine that statement.  Does bad stuff always happen to you, I mean always without fail?  Can you think of good things that have happened to you?  Does bad stuff ever happen to other people? Or is it only good things? 

I think you quickly get to a view that the original statement is just not accurate or balanced.  So what would be a better way of expressing that though?  Maybe its “Sometimes bad things happen to me, but they happen to everybody.  Sometimes good things also happen to me”.  I think this is a more realistic and balanced view and essentially is the starting point of a more positive mindset.

Also, be careful not to use words which re-enforce negative perspectives.  For example the word “always” is mostly never accurate either in a negative or positive context.  How often is something “always” this or “always” that?  You can start to identify these trigger words specific to you, challenge them and routinely replace them with better choices such as “sometimes” in the above example.  By the way, this is equally true of overly positive and  unrealistic phrases such as “Good things always happen to me”.  That’s likely not to be true and lead to overly optimistic expectations which are unlikely to be fulfilled.

C. I Run Me

This might sound obvious.  You are an adult, and you decide what you want to do – you run you.  However, often we let external factors such as other people or events run us.  I don’t mean by this that we can ignore all other constraints in our lives or that this means we develop a selfish approach to the world.  Rather it means that I get decide how I react to the world.  If something bad happens then I get to decide whether I’m going to let that make me sad.  If somebody is horrible to me then I get to decide whether I’m going to let that affect me.  If you don’t believe this then effectively your saying “other people run me” and you have handed over your power and agency to them. 

Correctly deployed this approach acts as a shield to your positive mindset against the inevitable challenges of day-to-day life.  Of course if somebody is horrible to you it will impact you at some level but the “I run me” mindset helps you recover more quickly. 

D. The More The Merrier

Research consistently says that happiness is strongly aligned to having a network of family and friends who help support us.  Put bluntly, you cannot do this alone and you nearest and dearest don’t want you to, they want to help.  In the context of disability I sometimes see a “hero” mentality where people battle on against all odds refusing help.  Why?  I get that people want to retain independence, but this is not an “either” this “or” that choice.  You can have both.  The bottom line is retaining a positive mindset is much more likely if your surrounded by a strong support network and you are willing to accept their help and support.

E. Be Good To Yourself, You’re Worth It

You are amazing.  Look at what you have achieved against the likely adversity of your disability. Think about all the positive things you have done, especially for others.  Given that view, why are you so hard on yourself?  You deserve to be good to yourself.  By focusing on the positives in your life and how you have coped with adversity you give yourself permission to enjoy life and have a positive outlook for the future.   

F. Focus On What You Can Do NOT On What You Cannot Do

I think this is a really useful technique for managing a deteriorating condition.  At the extreme it could be argued that I can now do more of some things. For example, I am no longer able to work which means I have more time to do things which I would never been able to do if I was fully working. Trying to look at your choices through this different perspective can be very helpful.

2. Be Pragmatic & Practical

I think these can be lumped together.  I find it is really important to me to not just have a positive mindset but to then deal with what life throws at me in a practical way.  I do this by assessing where am I?  Where do I want to be?  How do I get there?  Make it happen.  This really helps me deal with stuff.  It gives me control and agency over my condition rather than my condition ruling me.  Below are the various techniques I use here to be clear about what needs to get done and how:

A. What Is My Current Reality?  Where Am I?

This is always the starting point.  Its  searingly honest and accurate assessment of your situation.  It needs to cover both the logical, physical and emotional aspects.  Its highly likely you will need a “critical friend” to help you do this who has a wider perspective than the reality you deal with on a day-to-day basis. 

My general observation is that people with disabilities can sometimes consistently underestimate their realities because they have for years grown to accept the unacceptable.  In addition, they can be in denial because emotionally it would be too much to bear to admit the truth.  Try and push through this and get a clear view of the position you are in now and in the future.  You may need to work through denial, anger etc to come to terms with your predicament.

Risk & Fact-Based Approach – Try to be fact and risk based in your evaluation of your reality.  Try not to just focus on what you can and cannot do but the risks involved in performing tasks.  As an example, when companies look at whether their work practices are safe, they keep records of near misses (where an accident did not happen but came close) as well as actual accidents and then they map these.  The general rule of thumb is that for every 10 near miss you get an actual accident.  By taking this fact and risk-based approach they can fix hot spots before a nasty accident happens. 

Applying this to disabilities, it is common to suffer from falls whilst at home or out and about.  Why not make a record of these, including stumbles where you did not fall so you can build a fact-based view of your risk.  This greatly helps in making an objective rathe than subjective evaluation of your current reality

B. Where Do I Want To Be?

You can probably see how important the first part is given the second. Bluntly, how can you get where you want to be if you don’t know where your starting from?  This should be a realistic aspiration neither overly optimistic nor pessimistic. Some useful pointers here are:

Define the need not the solution – As an example, let’s say you define where you want to be as “being able to drive”.  That feels very much like a solution rather than a need.  The need is ‘independently get transportation to the places I want to go”.  Note the key difference here between a “want” and a “need”.  We can be very bad at distinguishing from what we want and what we actually really need – a critical friend can help you make this distinction.

The 5 Why’s – The premise here is that very often to strip away the symptoms by asking yourself “why” up to five times to get to the root of an issue.  In the above example, this could look like this:

  • Why 1. Why do you need to drive?  Answer 1. So I can get places.
  • Why 2. Why is driving important?  Answer 2. Because I want to do it by myself without relying on others.
  • Why 3 Why is driving the only way this can be achieved?  Answer 3. I guess it isn’t.
  • Why 4. Why is doing this independently important? Answer 4. I strongly value my independence and nobody else can assist at all times I need this
  • Why 5.  Why cannot you currently drive?  Answer 5. Because of my disabilities.

C. What Alternative Solutions Exist? How Do I Get There?

You know where you are and where you want to be.  So what are the choices on how you bridge this gap?  Try to brainstorm creative solutions as well as an obvious one.  Getting three to five alternatives is usually enough. The importance of this step is that often when solving a problem we only look at obvious solutions, often which we have tried and failed before.  Some keys to success here are:

Get external input and help to develop your thinking – Input from others can be key with the different perspectives they provide.  Try and get experts in this area to help.

Remember the definition of insanity – Insanity is doing the same thing over and over again and somehow expecting a different result. 

So applied to the above example on the alternatives for ‘independently get transportation to places I want to go” the options might be 1. Learn to drive 2. Use public transport 3. Use Ring & Ride 4. Car share 5. Have virtual interactions instead.  The above alternatives can be mixed and matched to the situations.  For example, option 3 might be best for shopping but option 5 for your annual medical review.

D. Select & Implement.  Make It Happen

It’s time to select the right solution for you and make it happen.  The keys to success here are:

  • Be Realistic – You can become demoralised if you select a solution which just is not going to work for you.
  • Know your strengths & Weaknesses – When looking how to make an idea happen be clear on what your strengths and weaknesses are.  This might mean you need help from others on the parts where you know you will struggle.  For example, if you are no good at details then get somebody who loves that stuff to do that part.
  • Does the answer “feel” right? – Its good to check whether the way forward feels right in our gut.  One technique to use is to agree a way forward and then flip a coin on the basis that heads means you are going to do it and tails means you will not do it (you don’t stick to what the coin says – see next).  Once you flip the coin and see the result then focus on how do you feel?  If it was tails and you feel relieved, it was probably suggesting something is not right about the plan.
  • I might be wrong – You might have selected the wrong option.  Be open to making a mistake and changing your mind.
  • Fail fast – The key to failure is to do it quickly, change tracks and start again.

To Illustrate Some Of The Above, I’ll Try & Bring It To Life With Some Examples In My Own Life

Diagnosis of My Condition – Because I had several frustrating years trying to work out what was wrong, when I got my diagnosis, I was both relieved and happy that I now knew what I had and could start building a plan on how to best manage the condition.  I quickly could embrace my new reality because it gave me more certainty.  I found a positive.

Getting a Stairlift – Getting up and down stairs was becoming more and mor difficult.  Interestingly, I was effectively in denial of this and it took a physiotherapist to point out the risks I was taking for me to realise things needed to change.  Yes, I could just about climb stairs but the risk I was taking was huge and one day it would go wrong, and the fall would be horrendous and likely result in a significant deterioration in my condition in the resulting rehabilitation.  Once I got it installed, I wondered why I had not done this years ago.  This illustrates taking a risk-based approach, getting independent input to show my current reality and break my denial and finally, being good to myself – I deserved a stairlift.

Getting a Wheelchair – When people first saw me in my new wheelchair, they generally expressed sadness that this was the next step for me.  My reaction was the complete opposite.  I saw the wheelchair as giving me new freedom because I could now go out to places that previously would have been to be fatiguing to walk.  Again, embrace the reality and find the positive.

Adaptions to my car– I began to struggle to drive my car without getting significant fatigue so I came to the conclusion I needed to get adaptions fitted. I did not know how to go about this, so the first step was to identify an expert to help me. Luckily such a centre exists in Birmingham and I booked a session with them. For free, they assessed my disability and the adaptions that best suited me. In addition, they had a selection of cars with these adaptions for me to test drive on the day so I could get a real sense of how they worked.  They even provided information on the best way to get these funded, and I decided to use the government Access To Work scheme which paid for most of the cost with my employer picking up the balance.  The adaptions were a real success and I’m so glad I had them done. I think the keys to success for me here were recognising I needed the adaptions, accepting it was time for me to get them, realising I needed help in deciding what adaptions I required and being able to try them ahead of time to confirm I could cope with them.

Coping with a deteriorating condition – my disability slowly deteriorates overtime. It has been over 20 years since I was first diagnosed and therefore the accumulation of this  deterioration is now significant.  I list below the successful techniques are used to cope with this:

  • Acceptance & Planning – Upon my diagnosis I read everything I could about my condition. It quickly became obvious that it was going to deteriorate overtime. I was able to come to terms with this quite quickly as my new reality. I then started to form a plan of how I was going to manage this. This was my way of taking control of my condition – remembering “I run me” not “my condition runs me”.
  • Fitness – A common theme in the literature was to make sure I kept the highest level of fitness possible to act as a buffer against my physical disabilities. I therefore initially selected a fitness routine which included cycling, rowing and weightlifting. These where my favourite exercise routines which both gave me the best chance I’ll be sticking to them, plus they focused on the core muscle groups that my condition would impact.  As my condition progressed I needed to continually adjust my fitness routine to those new limitations. For example, instead of cycling on the road I had to move onto a stationary bike in the house and in latter years I took up Pilates as a better match to my limitations.
  • Weight Management – Not only is managing your weight good for your health for me, being over weight could be the difference between being able to perform a task, such as standing up, or not given my disability – that’s a big motivation to succeed. Broadly your weight is the difference between the calories you expend and the calories you consume.  I have a double whammy here because as my condition deteriorates I cannot perform exercise at the same level and therefore burn the same amount of calories as I used to. The key insight was that I needed to balance my calorific consumption to match my dwindling expenditure.  For three months I recorded everything I ate in an app and had an Apple Watch which recorded how many calories I burned. This fact-based approach really let me understand the calories I was consuming and expending and how I could adjust both to match.  It was amazing how some food choices contained a disproportionately high amount of calories that I could easily swap them out for healthier choices with no real impact on taste or feeling full.
  • Work – Generically, somebody with my condition has to give up work sooner rather than later. I assessed that for myself that was likely to be when I was 50 years old. I kept a very open and close communication with my employer on my condition and how it was developing, with regular contact with occupational health. My work made sure I had all the necessary adaptions to continue doing my job and were very good in their support of me. We worked through the implications that stopping work would have to my pension so that we are all clear ahead of time. I finished work when I was 52.  This is a good example of accepting my reality and setting realistic expectations.
  • Finances – With the insight that I was going to have to stop work earlier than a normal person, I began really analysing my financial position. This involved going through everything that we spent and removing superfluous expenditure and doing monthly accounts so that I was really on top of the money that we were spending.  From my early 40s I insured that I maximised the amount of money I put into my pension fund, paid off my mortgage and accumulated as much savings as I could. In addition, I applied for relevant government support programs such as personal independent payments.  I was in the fortunate position to be able to do this and create the financial buffer to the likely financial stresses and strains that awaited me.
  • Staying on top of my condition – I tried to keep on top of the latest developments for my condition. I read everything I could from news articles, websites and Charities which specialised in my condition. I attended a one day review at a London hospital to get another perspective on my condition. I also participated in the hundred thousand Genome project which analysed my DNA and compare it to another family member. This led to a recent significant development which has in all likelihood more specifically located the genetic mutation that underlies my condition and may explain why my condition has developed more quickly and been more severe than is generally the case.
  • Managing progression – although knowing you have a deteriorating condition is useful I found it more helpful to chunk that down into more realistic shorter term goals. This meant that every year or so I would step back, look at the progression and course correct for what that meant in the next 2, 5 and 10 years.  I would then adjust my expectations accordingly to this new reality.  I try to focus on what I can do not on what I cannot or can no longer do. Put bluntly, there is little point wishing you could do things you no longer able to – you will just drive yourself mad. That’s easy to say but can be much more difficult to actually do, but acceptance of reality is the key.
  • Change is inevitable it’s how you respond to it that counts – This might sound grim but the reality is that even somebody without a disability has a progressively deteriorating condition – it’s called ageing.  Even more widely, change is inevitable in our lives and in the world.  Very few things stay the same overtime. The seasons come and go, your children grow up, governments rise and fall, letters become telegrams that become faxes that become emails that become instant messaging on a mobile phone that can fit in the palm of your hand.  Yes it’s true that having a disability effectively accelerates that change for you but the key is how you respond to change.  I try to embrace it, manage it and control it to make it work for me as best I can.

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