Over the last couple of years my health has progressively worsened. I have a chronic neurological illness, but as I am still on my journey within the NHS, I am as yet undiagnosed.
This is the second blog of a three part series about my journey with chronic illness.
PART TWO – emotional response
The progress of chronic illness, for me, has been much like the grieving process. Looking back on how I have dealt with this, I feel I have fallen into griefs trap. I am going through a massive change, and I have lost my once fairly active life. I believe I am nearing the final stages of grief, but like all human emotions, things aren’t predictable and a straight line.
What follows is an over simplification of my journey, for the purpose of this blog*.
FIVE STAGES OF GRIEVING –
The five stages of grieving were written by a Swiss-American psychiatrist called Elisabeth Kübler-Ross in 1969. Kübler-Ross herself, has stated that the stages are not a linear and predictable in progression, as was initially written. They are a collation of common experiences that can appear in any order, or not at all. [The headers I have used here vary slightly from the original used by Kübler-Ross]
‘I’ll be ok and it will pass.’ DENIAL – When I first became ill, I hadn’t contemplated that it was something that would become long lasting. I’d get the odd symptom, and I hadn’t considered going to the doctors to discuss them, I thought that they would just pass. My legs for example. I didn’t think that the foot dragging and inability to run without falling would be ongoing. I was planning on getting a bike and that would make me stronger. I kept making plans, I’m not ill. I am just not fit enough. I need to do more exercise. That’s all that’s wrong with my legs. My muscles aren’t strong enough. It took me two trips to A&E and over six months to finally go to the doctor to tell them something wasn’t right.
‘Why am I no longer considered? Am I not good enough?’ ANGER – Oh the frustration. That word is the all-encompassing emotion! I have experienced so much frustration in the last year. It leads to jealously. Jealous of people who are doing the things I should be doing. It leads to blame. People are taking the things I should be doing. It leads to feeling left out. Why aren’t they asking me anymore. That anger and frustration was overwhelming. It seeped through the very core of me. I’d post angry statuses on Facebook. I’d have internal tantrums that would sometimes wash out into public. Why is this happening to me?! Why are people not caring about me?! Why can’t I do the things I once could?!
There was something I had not initially noticed, whilst I was enduring these emotions; the affect my illness was having on my ability to carry out these tasks. I was not accepting it was my illness that had taken away my ability to perform. It had not taken away my desire to create, my talent, my ideas; I was just not capable of physically doing the things I was angry about losing.
‘I keep cancelling plans, I’m a bad person.’ GUILT – As a consequence of my frustration, some people had seen through my anger and began to offer me work. But my desire is not enough to sustain action. My freelance work was drying up, and any offers I was given, I began to realise that I was simply not capable of following through. I felt immense guilt to keep cancelling on people, and the worry that I was becoming incredibly unreliable. I work part time for a charity, which I love. I enjoy my work. However, over the last year I have taken so much sick leave, that the feeling of guilt is constant. I want to be in work, and as much as I am unable to perform when I am sick, I still feel like I am lying to my colleagues, that they won’t believe me, that I am away from work because I am lazy. I believe at this point I was equating ‘not doing’ as lazy. Not being productive was wasting time when I should be working hard. As someone who was very active in doing, it was difficult to remove that self-criticism of how I was spending my time. Relaxing is feeling guilty.
These feelings also extend to my social life, it was my guilt at being a bad friend; cancelling on my friends at short notice, being invited to events but never going, not going to exhibition openings, failing to go on trips I have organised.
‘It’s not because I want to be home on my own’. REFLECTION & LONELINESS – There comes a point where I began to understand what was happening, but in this process, I have lost friends, I have lost the ability to do the things I love.
Being ill can make you feel very lonely, because you become a liability. You cancel plans often, you aren’t very useful on long walks, slowing things down and requiring considerations when you go somewhere. You can’t go out drinking in the evenings because you’re tired before you’ve even left the house.
It seems such an obvious thing to say, but I like socialising, there are not many people who don’t. I like hanging out with my friends in beer gardens, and drinking beer, and going to gigs, and dancing, and going to the countryside, and walking. I miss those things.
From my experience, I have discovered that chronic illness fundamentally reduces the number of friends you have. I rely on visits to my house, or to the immediate area that I live. Having visitors and seeing people is the highlight of my day. Even if I think I am too tired to be good company, a cheerful smile can fill me with sufficient energy boosts from the comfort of my sofa.
The people around me have begun to accept that I am ill. I may get asked how I am, and if I’m answering truthfully, it puts people in a position where they may be unable to respond, or try to compare with their own situations and anecdotes**, to make me feel better; if I answer, ‘I’m ok’, people may think that my illness can’t be that bad, and I must be exaggerating. So, I have a request, if you ask how I am and I answer honestly, a good response would be, ‘I hear you, that sounds difficult, I’m going to try my best today to help you feel a little better,’ and then offer to help – even making a cup of tea is helpful, I’m a sucker for a cup of tea, oh and doughnuts. If you’ve asked me via a message, then a good response could be, ‘that sounds difficult, but I’m listening, get it off your chest and then we can talk about all the positive things you are also doing’. This isn’t prescriptive, a person who is ill is not to undergo troubleshooting like a machine – empathy and humour are my two favourite things; find out about my illness***, but above all make me smile. It is difficult if you’ve never experienced something to know how to behave or what to say, I’ve been in the same position before. But remember this! If you’re a friend, you’re not here to save me (I have doctors for that), and I don’t expect that from you, you’re here because we enjoy hanging out, I may need a little extra help than I did before, but my sense of humour hasn’t dampened – I’m just not as wild as I once was.
‘I am going to learn about my illness. I shall find a way to move on. I will learn to adapt. This is how my outlook shall advance.’ ACCEPTANCE & HOPE – I have become somewhat calmer, I’m learning to live with the huge changes in my life, and I’m finding functional solutions to problems. I do not yet know my diagnosis. But little solutions help. I’m preparing for summer. The heat is uncomfortable. Putting comfort before style is not something I would have ever contemplated with every purchase I made, but if it means improving a life with illness, then I will pick the cane regardless of looking older than my years, I will pick the odd-looking neck scarf if it cools my back. I do think there are improvements that could be made in the world of looking stylish whilst ill, we are after all still human, with the desire to look great at all times, but that’s for another blog. I’ve even learnt that relaxing isn’t doing nothing! Relaxing is letting my body recuperate. I’ve learnt asking for help isn’t giving up or being lazy. I have hope because I am getting closer to my diagnosis, and the closer I get brings me hope of treatment, of managing and coping better, of being able to have a new social life. I accept that this illness may well affect me for the rest of my life. It may get worse as I age. But I will learn to live with how I am now. I am lucky I had a very active life I can mourn, I got to experience much, and those are still my memories. I will have new memories, and they will not all be about illness. Of course it is easy to say I shall now always think positive, however, I am under no illusion that I may never fall under the feelings of anger, frustration, guilt, loneliness again. I just know that I have my journey and I must travel it no matter what roadblocks life gives me.
* NB: If you are reading this, and you also have a chronic illness, please don’t feel you are doing things wrong, this is my journey, and everyone is different. I have written this as an overview rather than as a day to day account. No journey is this simplified, and we do not pass from one stage to another, like A-B.
** Situations and anecdotes are ok if you are also suffering a chronic illness, there is comfort in solidarity with others who understand.
*** Find out about an illness a close friend or family member has, try to understand what they are going through, you may find better ways to support the person.
However, from my personal perspective (and I know many people who also say this), please do not try to give unsolicited medical advice, or tell me that a person you know with the same symptoms did things differently and was ok and I should be too. I understand this may come from a place of well meaning, but unintentionally it often feels like you’re judging me, or not trusting me when I say how I feel. I have doctors for the medical stuff, and don’t for a second believe I haven’t tried that thing I’ve already read and researched about.