Though many will be aware of the physical impact Lyme disease can have on a body, there is not always as much focus given to the psychological impact of dealing with a chronic illness.
As part of our Lyme Awareness month content, and during Mental Health Awareness Week, we are shining a light on this area and have asked Registered Integrative Counsellor, Deborah Jones MBACP for this guest blog, in which she gives us her top five tips on managing your mental health whilst dealing with chronic illness.
Chronic illness and mental trauma
Given that currently, around 15 million individuals in the UK live with a chronic illness, it is not surprising that within any of the areas I work in it has been necessary to understand the impact of chronic illness on the individual. It’s important to say I am not an expert in Lyme or indeed any other chronic disease, but I am an expert in understanding that because our lifestyles are so hectic and diverse, dealing with day-to-day tasks as well as a chronic disorder takes some learning, adjustment and support.
Each person is unique and we respond to stress or trauma very differently. Personally, I work with an integrative framework (person centred, psychodynamic and CBT theory), so this allows me to draw on a broad range of techniques and approaches to find flexible solutions for the problems and challenges individuals face.
The following is written as a tool to support people, but it’s by no means a definitive guide or solution. Further support can be obtained from a number of charitable organisations and counsellors who specialise in chronic illness therapy in addition to the client’s chosen medical support.
1. Know you have the skills to figure out who is best to help you look after your health
When you have a chronic illness, ensuring your needs are met, in relation to who looks after you, is really important.
I’m very aware that in the world of Lyme this isn’t always as easy as it would first appear. I’ve known those who’ve struggled endlessly to be even heard, let alone believed. All the while the journey to better physical health can whittle away any of your resolve to seek out further support. But I can’t stress too much the importance of being able to have someone, other than those close to you, in your corner.
Know that it’s okay to be a picky—whether it’s with your GP or your therapist. If you can’t trust them enough to be honest with them in the first instance then it’s likely you won’t be able to trust them to hear you when you most need it.
Finding a good enough relationship is imperative; if you find that you don’t have that kind of relationship with them, then try again and get a second opinion.
As I say, be picky and be challenging; it’s hard work I know, but in the long run it will pay dividends. I say this with the full understanding that it’s hard—seemingly impossible on some days but ultimately, worth it.
2. Be clear and have a definitive circle of support – again, be picky!
There are lots of challenges to our relationships when we live with a chronic health condition. Our relationships change; some can end entirely due to a lack of understanding or assumptions made regarding those illnesses. But others evolve and grow, and it’s there that we can find our true support.
There is a huge amount of trauma related to enduring chronic illness; whether its the diagnosis and financial impact, expectations of ourselves, or the loss of our identity, as we once defined it—and therein lies another relationship change; the one with ourselves.
All of these shifts and losses can lead to isolation and, in turn to possible depression, as it becomes so much simpler to isolate oneself when you feel so low and unimportant. Reaching out requires effort and can feel increasingly like a battle.
I am, I’m afraid an eternal optimist; I believe that sometimes, when you least expect it, people can surprise you.
Those people you know who are on the edges of friendship groups may just step forward and be amazing at just ‘getting’ how bad the bad moments might be. The surprises, of course work the other way too; those who you thought you could rely on may, for many reasons, just not have the capacity to cope with someone else’s pain.
Experience tells me that in general we are pretty good at assessing our social network and an individual’s ability to cope. For those in your safe circle, you can be honest. You can tell them the truth when they ask “how are you doing?” When someone outside the circle asks, maybe fib and say “I’m fine,” and change the subject. Trust yourself to know that they aren’t the ones to lean on and know that very often it’s those individuals that really can’t cope with the truth and you’ll end up having to take care of them; not what we are looking for when we are already trying to manage the demands put on us!
Know your boundaries; know it’s okay to say no and most of all, be kind to yourself. What does that even mean? Essentially, its about self compassion; accepting that we are human, not perfect (nor do we have to be!) and under very difficult circumstances, are striving to do our best.
3. Remember that it’s a mental health thing as well as a physical health thing – tend to it all as you would a chocolate soufflé…its all about timing and the right conditions!
You are more than your illness, but the part of ourselves that functions well is needed to advocate for it.
Cover the basics; sort out good sleep hygiene, exercise and eat well. Learn to listen to both the emotional and the physical signs of when you aren’t doing so well and give yourself permission to respond to them—remember, self compassion.
I know when I’m about to hit ‘a wall’ when my ability to concentrate reduces, my sleep goes up the creek (at the present time, I think we can all relate to that!), and my sense of humour fails; I become literal and reactionary. When those tell tale signs begin to appear, it’s time to have a look at what is going on.
With chronic illness, you operate under such energy impairment to begin with that if one doesn’t stop, assess and tweak the strategy, relapse—whatever that may look like for the individual—is very likely. And worst of all, the time to repair and heal can take so much longer, Set yourself limits and know it’s okay to say “no”.
4. Learn to manage your expectations…remember the ‘d’ and ‘c’ words
Our self-esteem is very much entwined in our own, all too often high, expectations of ourselves. We are measured, and measure ourselves constantly—all through our lives.
Learning how to not just survive but thrive with chronic illness needs us to reevaluate our expectations and learn how to measure our efficacy and success in a different way. Quality over quantity, always.
If you were that person who compressed three weeks work into an already ridiculous 60 hour week, it’s likely you’ve picked up a skill or two around delivering good quality work under pressure. Or perhaps your multitasking is really around your need to be in control (that’s a whole therapy session in itself) and letting go and relinquishing some of that control may bring about something more manageable.
Learning to recognise your assets and the quality of one’s work can help when adjusting to a new way of managing both your work and the expectations of yourself. But finding that new way can be hard.
One technique is to ask yourself is what is reasonable. Is it reasonable to do it all yourself or, is it more reasonable to delegate (the ‘d’word)? Could you up skill that eager newbie? Being their mentor could mean the quality is not impaired but the burden on you is reduced.
It’s at this point that courage (the ‘c’ word) is needed. Delegation and up-skilling isn’t always possible. Letting go of the control reins is not such a simple task. It takes a lot of courage to even start to look at the things that cause you to feel demanded on and indeed burdened, in a different way and to imagine and re-frame the value in doing things differently. There is some power in that vulnerability, as Brene Brown would say; lean into it and be creative.
5. You can and should still have goals; dreams even!
Chronic illness can scupper your whole life’s ambition, or so it might feel.
You may have relied on that 60 hour week to save for the little place in France you always wanted or have gained huge validation from being the multi tasking King or Queen.
Learning to live with chronic illness is likely to change aspects of both your capacity and ability to reach those ambitions the way you had originally planned. And indeed, you may need to rethink them altogether but don’t stop planning; don’t stop striving for something that inspires you and nourishes your spirit.
About Deborah Jones
I am a registered, qualified Integrative Counsellor. I come from a background in healthcare and whilst I both enjoyed and am very proud of my nursing career, I knew that I wanted my ‘helping’ role to evolve into something rather less clinical, though that clinical side of my experience has followed me around, somewhat!
So, after 18 years of nursing and having reached the dizzy heights of Matron, I retrained as an integrative counsellor. My practice is hugely supported by my medical and nursing expertise but not defined by it—its rather more a constant companion to the process. I am now retired from the register, ensuring I can focus on my counselling and psychotherapy practice.
I have extensive experience of working in education and private practice. My client group ranges from children as young as six to individuals of retirement age. I divide my practice into three; working in schools (that includes pupil referral units, special educational needs units, and mainstream secondary and primary schools); private practice (child and adult) and “no/low fee” work for adult clients going through the court system for care proceedings.
My work reflects my specialist interest and experience in the areas of attachment and trauma-based behavioural challenges, as well as the difficulties faced by children and adults with complex communication disorders.
Deborah Jones – Contact Details
07775 784 253