Coping with a diagnosis – wisdom from a psychologist

Woman sitting on a sofa with a worried expression
Everyone experiences their diagnosis in very different ways. There are a range of responses that people diagnosed with YOPD most often experience.

We’re sorry you’re here but glad you found us.

After a YOPD diagnosis, it can be difficult to know what to expect of yourself – physically and psychologically – even if someone close to you has had PD.

You might be feeling a lot of different emotions, or be feeling numb and disconnected. There is no right or wrong way to be thinking or feeling. When we feel like our experiences of overwhelm and confusion are a failure to cope, or even a sign of “losing it”, then it only tends to add to our distress or sense of being “alone with it”.

Everyone experiences their diagnosis in very different ways. We’ve tried here to give some information on the range of responses that people diagnosed with YOPD most often experience. We hope that, if you feel that what is happening to you is “normal” in the context of YOPD, you may avoid the extra layer of suffering that can come from being self-critical or worried about yourself. We also hope that it will offer some advice on how to negotiate any particular difficulties and signpost you to additional sources of help if you feel that you need more.Asking for help when you are struggling with something is a sign of strength, not of weakness.

How you might be feeling

Numb and/or “in denial”

There may be periods when you feel nothing at all, or feel very cut-off from yourself, from others and from day-to-day life. People sometimes describe feeling like the diagnosis is “not real” or a sense that they might wake up from this dream at any moment. This may be especially the case if your diagnosis was completely unexpected and/or if you have not had direct involvement from PD healthcare professionals since your diagnosis or received your diagnosis by telephone, any of which may have made it seem even more unreal.

Experiencing numbness or feelings of emptiness is a very normal and common experience to a diagnosis. Your mind is trying to adjust to a new reality with YOPD, whilst protecting you from being overwhelmed by the full implications of that all at once.

It is common for people to go into “survival mode” and busy themselves with the day-to-day tasks that need to be done to keep money coming in, people fed etc. There is also often lots of “admin” that comes with a YOPD diagnosis (informing the DVLA, setting up repeat prescriptions, finding out about YOPD, navigating NHS appointments systems etc.) to keep us busy. All of this “doing” can leave little time and energy for thinking and feeling.

This means that there can often be an “emotional lag” with a diagnosis. Later, once some kind of “new normal” starts and the initial “doing” is either done or becomes more routine, people can find that the emotional impact of having YOPD then begins in earnest. This is very normal but can be unexpected. It can also mean that people find themselves struggling emotionally just as the initial offers of support may have subsided and the people around them assume that they are “through the worst” and/or that they appear to have everything under control.

If you find that you feel detached for long periods of time, “stuck” in a space that feels disconnected from others or the reality of your situation, or if processing your emotional response to your diagnosis seems “endlessly deferred”, then you might want to consider getting some support outside your immediate circle.

Anxious

It is perfectly normal and understandable to feel anxious about being told you have YOPD.

Many people experience a “displaced” anxiety where they become worried about things they would normally have taken in their stride and which may seem to be unrelated to their diagnosis, such as using public transport, driving, shopping, or being in big social gatherings.

We can also experience a general loss of confidence in ourselves, such as feeling less able to do the day job, more unsure as a parent, socially anxious when we might have been  outgoing before etc.

Unfortunately, anxiety often produces strong physiological sensations in our body which overlap with PD symptoms (e.g. dizziness, muscle tension, nausea, urgently needing the loo, difficulty regulating body temperature) so this can often temporarily worsen our physical difficulties.

If you are experiencing these physical reactions persistently,you might want to speak to your GP or a meber of your healthcare team.

Sad/low

Sadness and/or low mood after a diagnosis is very normal. YOPD can involve a significant amount of loss: of physical ability, future plans, valued roles, of our former identity and self-image etc.[1]  Over time these changes can bring other opportunities and positives into our lives. Initially, though, what we may be losing is naturally more in focus.

The process of adjusting to this new reality with all the losses it might involve – a version of our present and futures we did not want and most likely did not expect – is often compared to the grief process[2] . For those of you who have PD in the family, your own diagnosis might be in the mix with grieving for those relatives or anticipating losing them at some point.

These feelings do not always involve crying, and if you feel that you are unable to cry despite feeling sad, this is not unusual. You might also find that you cry at times when you are not expecting to, or in response to things that don’t seem directly related to your diagnosis. It can be unsettling to find yourself crying during Frozen or when someone is kind to you at the Post Office if you usually wouldn’t, but you wouldn’t be alone.

The sadness, particularly shortly after diagnosis, can be intense for some people and you may feel at times that it will be impossible to go on or that life is not worth living anymore. While these thoughts aren’t unusual in the circumstances, if you are having thoughts about actively wanting to end your life or you are concerned about whether you can keep yourself safe, please consider sharing these feelings with someone that you trust and/or reaching out to your GP or PD care team (Consultant, PD nurse etc.). Here are some services that can support you:

  • NHS mental health hotline: 7am-11pm call 0300 131 7000 or text FRONTLINE to 85258  
  • Samaritans: 116 123 email jo@samaritans.org  
  • Health Assured 24/7 support – call 0800 028 0199 
  • NHS 111 to seek help and support  

Relief

Often a sense of relief can be in the mix, especially if the journey to the point of diagnosis has been a long and windy one. There can be a sense of release at finally knowing what it is that you are dealing with, that it has a name, that now a plan can be made. If you and/or the people around you had doubts about whether there was anything “really” wrong or whether it was “in your head”, or you have been struggling with your mood for some time, you are particularly likely to experience this.

This may be at odds with how other people you may tell are feeling – many of whom are probably facing the shock without the lead-in you may have had.This can make some conversations even more challenging or leave you feeling as though your response is strange.

Anger

It is very common and understandable to feel angry about having YOPD. It simply isn’t fair. Anger can be directed towards healthcare professionals for doing, or not doing, things that might have led to a diagnosis sooner or to you feeling more supported after the diagnosis. We can feel angry with ourselves and out bodies for letting us down.

You may find that you get intensely angry about seemingly insignificant or unrelated things (e.g. inconsiderate parking). You may experience anger towards strangers who appear to be carrying on as normal in a world that seems completely different: people who don’t seem to be taking good care of themselves but are healthy, for example. You may just find yourself more generally irritable and having more disagreements with those close to you, sending abrupt work emails or telling the kids off more.

These feelings are very common and it can be appropriate to express anger about the situation you find yourself in. However, acting out our anger or suppressing it can have unintended negative consequences on our relationships, our health and our everyday functioning. If you are worried that anger might be negatively affecting your behaviour – if you are becoming aggressive to others, for example, here are some services that can support you:.

Regret, guilt and shame

It is common to feel a sense of responsibility for our diagnosis: that perhaps we could have done more to look after our health and to go over whether it might have turned out differently if we had made different decisions. It may also be that you feel bad about the impact on your family, your colleagues etc. If you are a parent and/or if there are genetic factors in your diagnosis, this feeling may be particularly strong.

Feeling physically less able, vulnerable, emotional and unable perhaps to do everything we once could or want to do, can tap into feelings of deep shame: “a good mother would be able to do this…”, “a capable professional would not need this…”, “a strong man would not express this feeling…”

Try to bring self-compassion to these thoughts and be kind to yourself; you are doing your best in very challenging circumstances. You don’t have any control over having YOPD, but you can control how you treat yourself now that is the hand you find yourself dealt.

If you are feeling overwhelmed with thoughts that the diagnosis is somehow your fault or that the way you acted before or after it says something terrible about you as a person, for example, here are some services that can support you: . 

4 myths about adjusting to a YOPD diagnosis

Here are a few myths about the process of adjusting to a diagnosis and how it progresses over time, along with the realities that many people face:

Myth 1

“Adjustment takes place in clear stages, and once you have passed through one stage you do not go back to it.”

Reality: People move back and forth between feeling that they are coping well and not coping at all during the days, weeks, months and years following a diagnosis. There is no “one right way” to feel, and no “one shared path” that people take when they are getting to grips with having YOPD.

Unfortunately, perhaps, it doesn’t seem as if we get to “do anger” or “denial” and then move to the next stage. If we can try to accept this, it means that the morning, six months in, when we wake up and are shocked and panicked all over again, may not feel quite so confusing.

Adjustment shortly after a diagnosis does seem to be generally different from the experience of  years later, however. The early response is often intense and all-encompassing; understandably YOPD dominates in our thinking. Trouble focussing attention, “zoning out” and forgetfulness are all common. If you have been diagnosed for quite some time and do not feel that you have seen a significant shift in any of this, it might be worth considering getting some support outside your immediate circle.

Myth

“There is an acceptable period of time to adjust to a diagnosis, after which point you should reach acceptance.”

Reality: Everyone has a very different timeline for reaching some kind of acceptance of living with YOPD. It is not unusual for things to take longer than people expect to feel less upsetting. Try not to be impatient with yourself to be “back to normal”. Equally there is no rule that says you have to be acutely upset for a long period of time.

You may notice that the people around you are keen to set a timeline for you to feel better or be “back to normal”; maybe they are also adjusting to the news and they are doing it very differently or at a different pace to you. If you can, try not to judge yourself on other people’s timescales or to compare yourself negatively to your perception of how other people with PD are dealing with it.

Myth 3

“Adjustment has an endpoint.”

Reality: Adjusting to having YOPD changes over time, but it is unlikely that you will get to a point where you feel that your adjustment has “finished”, that you have completely accepted it and have living well with a progressive condition all figured out.

However, as our lives continue on, we often find that a bit of space opens up around the PD and it is not always as all-consuming as it feels at first. Immediately after a diagnosis, it might be that you spend most of your time in a mode that focusses on the difficulties and the loss. Over time, the reality and meaning of living with YOPD are better understood and we usually feel more able to re-engage with meaningful and pleasurable activities and relationships without it necessarily being at the forefront.

However, there is no prescribed timeframe for how this happens and it might not move in the same direction across time. There may be periods when you feel that you are “sliding backwards” and more intense feelings come up. This can often happen around the time of significant “anniversaries” (e.g. date of daignosis, birthday, the annual race you can’t now compete in etc.), during particularly stressful times, when other losses occur or when PD throws you a new curvball symptom.

Try, if you can, to accept where you are at any given moment and know that it may change in the next; this is part of being human and does not mean that you are failing to cope.

Myth 4

“It’s vital to stay positive; stress only makes PD worse.”

Reality: Pretending to feel positive when we don’t, only makes us feel worse;  we criticise ourselves for our real thoughts and feelings and become disconnected from the people who could support us if we weren’t putting on a mask. Whilst it certainly isn’t all doom and gloom having YOPD, it would be exceptionally unusual to only have positive reactions to a YOPD diagnosis.

As humans, we will naturally experience positive thoughts and  feelings (e.g. hopefulness, determination to live well with PD, joy, relief, contentment etc.). We need to pay attention to these moments; but we also need to allow some space for the difficult feelings too. It’s true that stress tends to exacerbate PD symptoms but we cannot avoid stress by consistently “bottling up” or avoiding emotions and thoughts that we’d rather not have.

It might be that you need to use some distraction strategies to give yourself a break from overwhelming feelings, but doing this all of the time will be exhausting for you and, unfortunately, won’t take away the feelings. In fact they may then “leak out” at times you would rather they did not (e.g. at work) or when you are not prepared to experience them (e.g. when buying milk). It is common for people who put energy into distracting themselves from “negative” feelings during the day to find that they can’t “switch off” to sleep: all the difficult thoughts and feelings finally have space at 3am when we’re alone in the dark.

Avoiding stress where we can and leaning into our positivity when it is around are good ideas; just be gentle with yourself in moments where this is more of a reach.

Things that can help with intense or difficult emotions

The research tells us very convincingly that if we keep trying to block or “bottle up” unwanted emotions, images or memories, this is only likely to increase our distress. It is human to want to avoid pain; helping ourselves to tolerate and accept difficult emotions is likely to serve us better though. It takes strength and courage to bear our own distress without engaging in unhelpful patterns (for example, self-criticism or getting stuck in thinking loops); here are some tools that might help:

“5-4-3-2-1” grounding:

This is a relatively simple approach to helping “anchor” us using the five senses.

5 – Wherever you are, take a few moments to look around, and notice (maybe name these in your head) five things that you can see.

4 – Next notice four things that you can feel. So that might be the contact between your feet and the floor, or your body and the chair. It could be the sensations of clothes against your skin, or the temperature or movement of the air.

3 – Become aware of three things that you can hear. (Again you may want to silently label these in your head).

2 – Focus now on trying to notice two things that you can smell. Do not worry if you find this difficult, the attempt to do this is helpful in itself in focusing you on the here and now. Some people like to keep a strong smell with them that they can use (e.g. a small bottle of essential oil, a nasal inhaler for colds etc.)

[If loss of smell is one of your symptoms, you can skip this one and spend longer in another sense (e.g. you might want to notice five blue things you can see and then four rounded things you can see before moving on to what you can feel)]

1 – Finally, focus on one thing that you can taste. You could just notice whatever taste is currently in your mouth (which might be subtle) or it could be helpful to take a sip of water or a snack and just pay attention to what that tastes like. Some people like to keep something strongly flavoured with them (e.g. strong mints, boiled sweet, throat lozenge). Again, if loss of taste is one of your symptoms, you can either focus on the sensation within your mouth (e.g. of liquid or of air passing through as you breathe) or spend longer in another sense.

This will not make the thoughts or emotions “go away” and it is not about trying to avoid them but it may help you to slow down and create a space around the feeling. It can be particualry useful if you start to feel panicky.

Mindfulness

This can be helpful with learning to better tolerate difficult thoughts and emotions: it can help us to notice unhelpful (although understandable) attempts to avoid intense emotions and become more familiar with our own reactions to them, such as suppressing or blocking. It can also help us to “be with” the experience of strong emotions without being overwhelmed by them. The links below are good places to start if you want to explore this:

https://www.headspace.com

https://www.nhs.uk/conditions/stress-anxiety-depression/mindfulness

If you have experienced periods of depression, and haven’t tried mindfulness before, the research suggests the need to be cautious. It might be better to start with a group or taught class where you can access support as you learn the skills and see if it works for you.

Soothing Rhythm Breathing

Research has shown that learning to breathe in a calming, soothing rhythm can affect our bodies in ways that help to create an inner sense of stability in the face of strong emotions. If you want to try this, sit somewhere quiet in a comfortable upright posture, resting your gaze or closing your eyes, and notice how you are already breathing. Then gently try to breathe in a smooth, even way. This is likely to be a slower, deeper rhythm than usual but it should feel comfortable to your body. To begin with it can be helpful to count in your head alongside your breathing: breathe in deeply through your nose for (1-2-3); keep your lungs full (1-2); breathe out through your mouth (1-2-3); keep your lungs empty (1-2); repeat. Exact timings are not important but see if you can slow down over time. You can download apps to your phone that can help set a soothing breathing rate (for example, take a look at Breathing Zone or Calm). This link is a good place to start if you want to explore this further: www.balancedminds.com

Try writing

Sometimes, when we are caught up with intense feelings, it can be helpful to use writing to gain a little space from the experience. Some people find that they can break thinking loops by getting them down in black and white, and perhaps gain some perspective.  It does not matter for this purpose, if what goes on paper or gets typed makes much sense to read back.  There is strong evidence that keeping a gratitude journal can benefit our mood so you could also try capturing what you feel grateful for each day.

Some people find it particularly useful to keep a pad and pen by their bed to get down strong emotions or racing thoughts at night that are making it difficult to “switch off” and sleep.

About the author

I’m Sam. I’m an NHS Consultant Clinical Psychologist with twenty years experience of helping people navigate the impact of physical health problems and medical treatments on their lives. I am also a mother, partner and friend living with YOPD.

Share the Post:

Related Posts

Stay updated

Subscribe to our newsletter for the latest YOPD research, news, and inspiring stories.

Portrait of man at home, sitting on a comfy chair, leaning forward and smiling