I talk to myself! Actually, I talk to myself a lot. Not just in my head, out loud as well. Personally, I find it pretty cathartic. It helps me figure things out rather than keeping things rattling around, much like writing in a journal I imagine. We all have this inner dialogue, made up of all the different parts of our identity, stories and beliefs. We may as well embrace them, observe them and learn from them, be mindful with and of them. Sometimes they exist in harmony and other times they can create a pretty passionate debate inside our minds and a feeling of great discomfort. Hey, how would we learn and develop if we just agreed with ourselves all of the time.
There are many parts to my identity. Two of the perhaps more obvious parts are my knowledge, development and experience as a Doctor of Clinical Psychology, and my knowledge, development and experience as someone who spends a great deal of the time house and bedbound due to a chronic illness; a weird dichotomy to say the least.
Being a Clinical Psychologist when you have a severe chronic illness can be pretty useful, but in equal measure it can be, put simply, a pain in the ass. The good thing is I get to see things from different perspectives, providing me with much-needed insight into both my professional and personal life. The challenging aspect is frequently finding this very conflicting and frustrating, wondering how to exist in both these perhaps at first glance opposing realities. I literally, metaphorically and in equal measure, have held and hold space on both sides of the clinic desk.
I believe there is always a silver lining in life and mine is that I can put pen to paper, or in my case voice recognition software to computer, to put some of this inner and outer dialogue of mine to good use.
So here you go, my Dr me guidance on living well with a chronic illness, alongside the patient me (Krissy), commentary.
Dr me: Pacing – evaluating how much you can do without causing the type of aggravation that will set you back in what has become your new normal – is a vital aspect of managing your condition.
Patient me: You will frequently feel like you are walking on a tightrope, with a book on your head and china cups and saucers in both hands. Sometimes the tightrope might get wider, sometimes thinner. Sometimes the book on your head will be heavy, other times light. Sometimes the China cups and saucers will feel sturdy and part of you, whilst other times you may feel like they are overflowing and fragile. You may perhaps drop some things from time to time, or indeed have a great wobble or fall off. You will eventually however get up again, fight again and pace yourself again, because you know at the end of the day you have very little choice.
Dr me: Accepting your situation and the moment you are in will without a doubt help you live your life the best way you can. This does not mean that you have to give up or you will never get better, rather it encompasses the idea of trying to be okay with whatever is happening in any given moment.
Patient me: You will be repeatedly told this by Doctors, Consultants, Clinical Psychologists, Physiotherapists, Occupational Therapists and any other type of health professional you come into contact with. You know they are just trying to help and that they are in fact completely right. Nonetheless, you might intermittently fantasise about creating a voodoo doll, sticking pins in it, and when they complain kindly suggest they lean into the pain and try to just accept the intense pin pricking sensations they are experiencing. Such fantasies are perfectly natural (I hope) and can keep you very entertained. Refrain from acting on them however, otherwise we will both get in trouble.
Dr me: There is a psychological component to all physical difficulties. After all the brain is also an organ and there is constant communication going on between it and all of our other organs and vice versa. The majority of people experiencing chronic illness will experience a link between stress and their symptoms. Our psychological well-being (thoughts, behaviours, emotions, subconscious processes) and physical well-being are continuously entwined.
Patient me: For a whole host of reasons (the feeling of helplessness; lack of understanding; stigma; lack of training; lack of research; being burnt out themselves; not enough resources or time; passing on responsibility to other professionals… I could go on forever) you may frequently be made feel by healthcare professionals that your condition is psychological in nature. You may feel and that other potential factors influencing your condition are ignored or over looked. This may be even more the case if you have a condition that is less understood, or does not have a clear route for diagnosis or treatment. It is possible that you recognise that some aspects of your physical symptoms have been impacted by stress or your general coping mechanisms. You may be afraid to admit this to healthcare professionals or indeed your friends and family, in case all aspects of your physical condition are attributed to your mental health or as many people might put it, ‘all in your head’. To compound things further, services specialising in effective psychological treatments to help address this component of chronic illness are not as nearly as readily available as they need to be.
Dr me: When living with a chronic illness your support network has an incredibly important and indeed invaluable place in your life.
Patient me: Having loved ones in your life who you can spend time with, talk to, receive care from, not feel judged by and just generally be with, can make living with a chronic illness much more bearable. However, the difficulties you experience do not just impact you; they inevitably impact everybody around you. Some will be able to cope with this, others will not. Some will stand by your side, others will not. Some will not judge you for your illness; some will struggle to understand it at all. With regards to those who do join you in this part of your journey, it is vitally important that we also whenever and however be there for them. Relationships where chronic illness becomes a part of the dynamic, are a two-way thing, with people supporting and caring for one another. This might will most likely take a very different form than before and take some creativity to figure out. Then there is of course trying to make new relationships when you may no longer be able to do a lot of things you were able to before and require a lot of rest time in order to take care of yourself. Figuring out how to create and maintain this all-important support system is an ongoing process and balancing act in itself for everybody involved.
I hope you enjoyed this little introduction to my inner dialogue, influenced by being an expert by training and professional experience and an expert by life experience. My experiences have left me more passion than ever to advocate for ongoing collaboration between clinicians and patients. It really is only by working together to understand and advocate for one another, whilst making it clear to those who govern us that we all expect and necessitate so much more them than what is currently being provided, that we can truly evolve patient care.
For now I want to let each and every one of you who like me is suffering with a chronic illness, or loves someone with a chronic illness, to know – I hear you.
Krissy / Dr Abercrombie