Uncertainty

The challenge of uncertainty, managing anticipatory grief and anxiety

The challenge of uncertainty

One of the most challenging aspects of living with a rare condition is the amount of uncertainty that can be involved.

Rare conditions can often behave unpredictably. It can be hard to predict the nature and timing of their impact. Two people with the same condition may have quite different symptoms, or have different severity of impact.

Types of uncertainty

Living with a lot of uncertainty is emotional ‘hard work’. Developing strategies to help cope with related aspects, like anxiety and stress, can be helpful.

The uncertainties associated with rare conditions fall into two types:

Short term uncertainties:

will today be a ‘good or a bad day’ with respect to your symptoms
will the healthcare provider you talk to today have heard of (or understand) your rare condition
will your travel arrangements to an appointment go as planned
will you get to see your preferred doctor today (or the one you don’t much like)

Longer-term uncertainties:

how to plan your work-life or career with regard to your condition
what treatment might be available (or become available) for you
what impact on your condition might have on your relationship with a partner, or other family members
worries about death and dying

Therapist Tip

When coping with uncertainty, it can help to think of yourself as ‘building psychological muscles’. The more you use those muscles to carry the weight of uncertainty, the stronger you get at doing it. With time and practice, it can start to feel a bit easier.

Coping with uncertainty

Managing and planning your life around a lot of ‘unknowns’ can be very challenging. We all have different personal thresholds for coping with the emotional impact of uncertainty. Some of us can naturally cope with it more easily than others.

How you feel about uncertainty will depend on a number of factors including:

your personality, age and life-stage
how much uncertainty you are already coping with
how uncertainty was managed in your family when you were younger
neurodiversity
religious, cultural and personal beliefs
the amount of practical and emotional support available to you

Uncertainty & anxiety

Too much uncertainty can lead to feeling anxious and stressed. It can also involve difficult feelings like disappointment and frustration when plans have to change, or be postponed.

Therapist Tip

If you catch yourself being ‘down’ on yourself, challenge that thought. We can often feel frustrated that we are not coping or managing better, particularly ‘if only’ something else was different – for example, if we had more help, were less tired or had an appointment sooner etc.

What helps?
Accept uncertainty, rather than ‘fighting’ it
Accepting uncertainty allows you to divert your emotional energy from struggling against it, to managing it.

Remind yourself
Uncertainty can be  a difficult part of life (even without a rare condition).
You are still ‘building muscles’ for coping with uncertainty.

Maintain your underlying health
Sleep, stay hydrated and eat as healthy as you can.

Make deliberate choices
Sometimes, it might take all your energy just to get through the day. It’s ok to let some things go.

Focus on what you can control, not what you can’t
Remind yourself some things you can influence and be in control of, and some you can’t.


Focus on preventing symptoms
Manage your diet, do exercise or physio or take your medication as prescribed.

Hope for the best, plan for the worst

If you are living with a lot of uncertainty, it can feel hard to make plans. Allowing yourself to look forward to something whilst aware of the possible disappointment of it having to change can be a tricky balancing act.

However, being able to make plans that are both short and longer term is often important for our overall well being.

How to do this in a way that supports our capacity to cope with change and stay flexible is key. Below are some strategies that can help.

It felt so, so hard to plan and think ahead. Not just one day to the next, but next year, next month too. Things feel more stable now, but I guess I’m still pretty cautious.

Have a ‘Plan B’ for if things need to change

Having a Plan B allows you to think through in advance both the practical and emotional implications should plans need to change.

Some examples might include:

If you are not able to attend a social event, such as meeting up with a friend, reschedule it as soon as possible so you have a new date and time to look forward to.
Find different ways to participate in an event you are finding difficult to attend. This might mean joining via video-link, only going for a short period only and/or arranging to have a ‘quiet/rest space’ there if you need it.
Ask a friend or relative to attend an event on your behalf. If possible, make a video for you that you can watch later with them and other participants.
If a bigger event is not possible, hold a ‘mini-experience’ such as a special evening with a friend, rather than a party.
Where possible, add cancellation insurance for holidays and travel arrangements etc.

Therapist Tip

Having a ‘Plan B’ is also important after receiving tests, treatment, or being a hospital in-patient. Always ask who to contact, and what to look out for if recovery does not seem to be going as planned.

Have a ‘Plan C’ … or ‘Crisis Plan’

A crisis takes time to both manage, and to recover from. You need to look after yourself. Put other demands and responsibilities ‘on hold’ as best you can whilst you recover.

A crisis includes things like:

a medical emergency or event
something unexpected or unpleasant happening during a medical procedure
the need to take time-off work suddenly
unexpected difficult news

‘Small C’ crises are not life-threatening, but can still be very disruptive, and impactful.

‘Big C’ crises are those that are potentially life-threatening, or emotionally overwhelming.

All crises have the potential to be traumatic.

By their nature, many crises are unpredictable. However, if you know that your condition has the potential for creating a crisis, a ‘crisis plan’ can help.

A crisis plan should include:

what you need to do practically (step-by-step if needs be)
who to call on for support if needed
how to manage the rest of your day/week to allow time to recover

Coping with anxiety

Anxiety is often a ‘side-effect’ of uncertainty.

Learning to manage and cope with anxiety is therefore a very helpful skill to learn. What works for you, and what you find helpful, will be based on you as an individual.

You could try:

using some of the coping strategies in You and your emotions
make clear Plan B’s or C’s as necessary for specific scenarios
accept that some things cannot be known or planned for (even though this is hard)

Remind yourself that you have the capacity to cope.

Therapist Tip

Coping with a lot of uncertainty and unpredictability can be very stressful. If you are struggling, ask for help from someone you know and trust, or a professional.

What helps?

Identify your anxiety & worry ‘triggers’

Certain situations or environments might trigger worry or anxiety, particularly if you associate them with a previous difficult experience.

Worry book

If you worry at night, write down your worries. Come back to them in daylight when you can think them through more easily.

Take practical actions

Facing the worry can help you decide the next steps.

Identify who can help

For example, speak to a financial/benefits advisor about money worries or your doctor about a particular health worry.

Be assertive

Ask for what you need. Learn to say no

Learn relaxation & stress management techniques

This can also help prevent (or ease) some symptom ‘flares’.

Focus on dealing with the ‘next thing’, not ‘everything’

You do not have to (and cannot) know everything at the outset. Some things will only become clearer in time.

Break big tasks up into smaller ones

It’s easy to feel overwhelmed. Remind yourself that mountains are not climbed in a day, but in stages.

Prioritise tasks

Make a to-do list and then order your tasks based on urgency or can wait.
Review list regularly to help manage feeling overwhelmed.

Stay in the present

We can often spend a lot of time worrying about future events that have not yet happened.

Although this is ‘human nature’, often the future is not exactly as we imagined when we get there. Research shows that we often cope better with difficult future events than we initially imagine we will.

“Worrying is carrying tomorrow’s load with today’s strength – carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” Corrie Ten Boom

You can read more about managing worry and anxiety on our You and your emotions pages.

Mindfulness

Mindfulness is a very well-evidenced technique that can help cope with uncertainty, unpredictability and anxiety.

It’s increasingly being taught as a skill on the NHS to help manage health conditions, pain and stress.

One mindfulness’ central themes is to bring your attention back to the ‘present moment’ rather than focus too far ahead (on the future) or on the past (which has already happened). This frees up your psychological resources to deal just with the demands of the present.

You can find more information about Mindfulness from the NHS here.