I was compelled to write this following a discussion that was had within a narcolepsy focused Facebook page, which discussed how people with narcolepsy perceive other sufferers. Some individuals were of the opinion that those who have the condition and are able to manage it well, can potentially make others feel worse about themselves if this new found energy is used to raise public awareness.  On first reading I was baffled as to how anyone could regard the raising of awareness in a negative light; particularly as it is generally accepted among sufferers, that the lack of public awareness can be a major contributing factor in our decision to disclose symptoms to others. It soon became obvious that the real underlying issue wasn’t what these individuals were doing, but the mere fact that they are able to do these things in the first place.

Emotions such as envy, jealously and anger are often regarded as negative in nature and in some way deemed inappropriate. I’m not entirely in agreement with this. Yes emotions such as these can be destructive, but this doesn’t make them any less valid or inappropriate. I personally currently feel a great deal of envy towards anyone (with or without narcolepsy) who has enough energy to live a balanced life. As someone who has had the condition for over 15 years and currently sits at the upper end of the severity scale (I’m not currently able to work or drive); I’m not only envious but also a little frustrated and angry. I consider these perfectly normal reactions for someone in my position and don’t feel that I or anyone else should hold any shame towards any of the feelings we may have. I use them to fuel my determination to make positive changes within my own health care and will continue to use them to address wider issues that will hopefully ensure that the next generation with narcolepsy find it a little easier to deal with.

Talking to lots of other PWN (people with narcolepsy) recently has confirmed to me that our reactions and feelings felt towards the condition, mirror research detailing peoples experiences of other chronic, debilitating conditions such as MS (A Mitchell, 2005, Thomas et al, 2009). Research confirms the logic that most people experience negative feelings at some point, to some degree and that we should perhaps place greater focus on how we manage these emotions, rather than on how inappropriate they may appear to others. I won’t go into this today, as I would like to concentrate upon identifying the range of emotions and process we may find ourselves going through and suspect that this will be fairly lengthy as it is. No surprises there then!  I’ll focus upon healthy management of emotions in the future.

The spectrum of emotions experienced upon onset and diagnosis of a chronic illness are often compared to the grieving process within the academic arena. Psychiatrist, Elisabeth Kübler-Ross was one of the first to address this and extended her famous Five Stages of Grief theory to this affect in the 1970’s. Her theory is considered a little out-dated and although there have been many attempts since to redefine peoples chronic health experiences, the five stages of grief remains the easiest way that I can explain emotions within a theoretical context and not bore too much! Well I hope anyway! I’ve adapted each stage description and made references to my own experiences at times, in order to keep them relevant to narcolepsy…

Denial
Denial, something that most PWN have experience of to some degree. It refers to the mind-set that prevents full understanding of how narcolepsy will affect our future lives. We may remain adamant that our symptoms won’t cause too much disruption and that we will achieve things despite a diagnosis being made. We may acknowledge symptoms and diagnosis’s, but fail to make any real adjustments to our routines and try to continue living lives in much the same way we did before. We are aware of the facts of the condition and may have even spent a great deal of time researching the subject; however information hasn’t truly been absorbed or processed, and consequently there is little real understanding of exactly how our lives may need to change. Publicly we may play down how symptoms are really affecting us and become experts at hiding symptoms wherever possible. As a result we may appear to have been unaffected by the news of our diagnosis and remain in high, positive spirits. This can often be misinterpreted as easily found acceptance by both ourselves and others.

Anger
The ‘anger’ stage can be triggered upon the realisation that major adjustments to our lives do need to be made. The direction and focus of this anger can vary greatly and we may ask ourselves questions like…Why is this happening to me? What did I ever do to deserve this? It feels like some kind of injustice has taken place and that we may never have another day of being energetic and happy again. We may become frustrated by others reactions and lack of understanding of the difficulties we now face. Personal relationships maybe at risk of becoming strained, particularly if dynamics such as financial or emotional dependency are forced to change.

Occasionally, some people may view diagnosis’s in terms of punishment, with people attempting to identify connections to past behaviour or religious reasons. I’m afraid there isn’t one to be found. We’re not affected by this condition because of anything we did or didn’t do. As an atheist, I don’t believe that any higher power is punishing me. It’s just life.

Bargaining
Anger can sometimes (but not always) merge into bargaining where people use hope and negotiation in attempts to change the illness. Some may adapt their behaviour in some way, in hope that the illness will also adapt as a result.

Depression
Depression is an understandable reaction to the recognition that lives from now on have changed, with new limitations forced upon us.  Our self image, self-esteem and self-confidence may adjust negatively and we may consider ourselves as duller, greyer versions of our previous selves. There may also be an increased awareness of how others now view us and be fearful that we are at risk of judgement. We may consider ourselves a burden to significant others or worry that our opportunity of finding love and affection has now passed; that we may no longer been seen as attractive to others.

New limitations of things that we can and can’t do become more noticeable and increasingly difficult to ignore. We are continually reminded of stark differences in our abilities before and after the onset of symptoms, something that is particularly relevant if we struggle to maintain family or work commitments. We may find that we don’t have enough energy to deal with all the everyday tasks that we once didn’t give a second thought to and become over-whelmed by what is required of us at times. We may become very anxious, leading to a crash in confidence in our ability to do anything; further confirming any thoughts we may have that we are failures. We have to push our bodies to extremes, work harder and yet we achieve less. It’s no surprise then that depression can occasionally feed apathy. Without something to maintain our focus upon (parenting for me), we may ask ourselves what’s the point of it all? Whilst we are struggling within our dull, monochrome bubbles, friends and families lives seem to continue around us in exciting, bright, high-definition multicolour. It’s difficult to not compare and feel enviable.

Depression maybe further exasperated if symptoms have imposed changes to things that we regard as significant and important, such as employment, education or an ability to drive. My symptom management is just not compatible with working at the moment and this is something that I have really struggled to come to terms with. Suspension of my licence on medical grounds is another constant frustration. The combination of the two have sometimes felt like my freedom and identity have been taken away from me.

Acceptance
Acceptance of the condition is more likely to sneak up on us, than make big, bold gestures. It’s a gradual process that slowly leads us to a point of being at peace with how and who we are now.  It becomes easier to see within the realms of limitations and become skilled experts at knowing what we can and can’t do. We can be open and honest about any limitations to others and happy to educate others about the condition when the opportunity arises. The ability to rationalise any feelings of guilt towards these limitations are much improved and in the main, we become less affected by the associated negative emotions that would have once eaten away at us. The dark cloud feels like it has lifted, allowing a little colour back into lives and we are increasingly able to enjoy ourselves more often. We may even learn to be a little thankful towards narcolepsy. It can sometimes teach us to focus upon the priorities in our lives and appreciate at a slightly deeper level. We may have a greater understanding of how precious time really is because of our experiences and spend our limited amount of time wisely, concentrating upon things that really matter to us.

If I were to adapt Kubler-Ross’s theory, I would firstly not regard the above stages as a comprehensive list of all emotions experienced, nor make assumptions that these stages flow directly into one another in any one general direction. We all react differently and may not necessarily adopt any one particular route.  I would also introduce an element of  ‘tolerance’ and question the concept of ‘acceptance’. Is it possible for everyone to reach true acceptance or do some people merely learn to manage symptoms, by creating routines around them? (Corbin & Strauss, 1988). In addition to these, I would draw attention to the frameworks inability to accommodate other contributing factors that may not be considered constant variables. The impact that some symptoms (such as frightening hallucinations) can have upon our behaviour maybe influential to where we are within the denial-acceptance scale. The same may also be true for the following….

  • the severity of symptoms experienced
  • how openly a person has disclosed their experiences of the condition
  • the reaction of people upon disclosing symptoms
  • how much of a disruption symptoms are to family, working and social lives and whether these commitments can continue to be maintained easily
  • the effectiveness of our existing coping mechanisms
  • the level of medical, emotional and practical support received from clinicians, friends, family and significant others

The above is by no means an exhaustive list. I’ve kept it brief – well everything is relative! If I had to place myself somewhere within the process, I would say I’m currently between tolerance and acceptance, with a new awareness of poor medical support leading to anger!!

Narcolepsy isn’t a static condition. Occasionally we identify a way to improve our symptoms and other times may find ourselves back at square one. Medication that works now may not always be affective, as it is not unusual to build up tolerance to many. How we work through these frustrations will be individual to us. Don’t beat yourself up because you appear to feel differently to others. Take comfort in the fact that most people have felt similar emotions at some point, just that we are all at different points in our journey.

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