Writing about living well with chronic health problems, mindfulness in action and common mental health problems and everyday living. For older articles see archive page and for CFS/ME Support for Family and Friends book click here.
How to be a good friend to someone with chronic invisible illness.
Isolation can be a big problem for people who have chronic long-term conditions - and there are particular issues for those who exist partly in the ‘well world’: employed or working in a caring role. It can feel as though you are never fully ‘seen’ and understood, surrounded by people who don’t ‘get’ your problems. At times living with constant pain and fatigue can really get you down, and this can be when you need the support of others the most.
If you have a friend or family member with chronic illness who you love, please consider these points, it could really help them and your relationship with them.
1) Don’t stop asking how they are - they may have been ill for years and generally cope well but there will still be things that they need help with
2) Check your assumptions - they may look well and take part in an activity but this doesn’t necessary mean they feel ok, they may be in pain and suffer for it later
3) If they have told you that they are doing better lately don’t assume this means they are ok, chronic illness rarely completely goes away
4) Know that medical appointments can be a big deal emotionally - wish them well and remember to ask how they got on, or even offer to go with them
5) Don’t say ‘oh, I had that once’ if they tell you about a new symptom - unless you have the same health problems this can feel dismissive and will probably have greater implications than it would for a healthy person
6) Be aware that being strong and having good coping strategies doesn’t mean zero vulnerability or need for support, feeling ill all the time is challenging
7) Keep up to date with their needs - chronic illness affects every part of life so ignoring this part of them can feel like rejection
8) Show them that you care - whether you offer full-on emotional support, practical help, a quick chat, a card, text or email, whatever suits the type of relationship you have with them - finding a way to ask how they are and acknowledge the difficulty of their situation is really valuable
We are all doing our best - life is busy and everyone has problems - but please don’t forget that your loved one lives with the additional challenges of chronic illness. You could use this article to start a very useful conversation.
10 self-care lessons you can learn from a counsellor.
Counselling is a demanding job and can be stressful. It is also wonderful: consistently challenging, inspiring and fulfilling. Supervision, lifelong learning and self-reflection are built in, and seeking your own counselling during times of difficulty is the norm. This acceptance of being human encourages a healthy balanced life so here are some of the lessons it teaches:
1) There is no shame in seeking support
In therapy having the support of a supervisor is a professional requirement as hiding doubts or denying limitations could put a client at risk. When looking after vulnerable people a willingness to acknowledge your own needs should be encouraged - how can you expect those you care for to do this if you can’t? Being honest about your capabilities is also important for trust in the therapeutic relationship, people can sense anxiety. A helpful life lesson for anyone with responsibility for others, whether as a parent, carer or professional.
2) Looking after yourself benefits everyone
Caring for others in any form can take its toll on physical and mental health. In the counselling profession you quickly learn that if you don’t take care of yourself you won’t be able to help others to your best ability, so self-care is far from selfish as it benefits everyone. Time for rest, relaxation, exercise and recharging in your daily routine is essential.
3) Acknowledging vulnerability actually makes you stronger
Showing a stranger your vulnerability takes courage - seeing clients repeatedly face up to difficulty, learn, change and grow is inspiring. Counsellors have to be willing to do the same in times of challenge to ensure their work is not adversely affected by their own issues. This process brings increased confidence in your own strength and acceptance of your whole self - doing this routinely without shame is a very healthy thing.
4) Night is the time to let go
Hearing the people’s most personal stories is an absolute privilege, but for it to be sustainable you have to develop the ability to compartmentalise or ‘put away’ issues. Strong boundaries around non-work time and completely ’letting go’ at night are essential. A great way to manage stress at the end of work is to make note of what you are going to do and when, or an appointment for support, then let it go. Having a strong sleep routine that supports your body and mind to wind down is also vital.
5) Strong boundaries make a healthy life
Seeing many clients a week makes holding boundaries an essential professional skill. A counsellor who worries about every individual between sessions won’t last long. Routines for notetaking, planning for supervision, additional reading and reflection are all strategies that we use to cope, and rituals for literally locking these away at the end of a session helps with the move back into personal life. How can you make some separation between your caring and personal roles?
6) You can only do your best
Having the confidence to say ‘I’ve done all I can’ and knowing the limits of your responsibility are vital for a therapist. In any given situation we can only do our best and once that time has gone we must let go. We all have ‘off days’ and are rarely solely responsible for another person so knowing the limits of your role, being kind to yourself and letting go of a need to ‘fix’ others is a healthy attribute.
7) Switching off is a daily essential
Making space for activities that recharge and refocus you brings vital balance to the demands of therapy and life in general. Losing yourself in creative, active, relaxing or entertaining activities must be a routine part of life if you want to stay strong and able to focus when you are working or caring. Yes, that means actually scheduling time for you with equal importance to work or looking after others.
8) Accessing your own support network is an essential responsibility
Seeking peer support, monthly supervision and regular reflection are an integral part of a counsellor’s job. This is unusual even among related professions, and it is a precious way to ensure your own wellbeing stays on the agenda. Getting used to valuing and taking care of yourself benefits your clients and is a great life lesson, modelling the self-awareness and acceptance of therapy.
9) Value yourself as you value others
Counsellors believe that we are just as human and potentially vulnerable as our clients rather than some superior being, and seek to work alongside people rather than lead them. This is underpinned by a belief in a positive human drive and unconditional positive regard for our fellow humans. Not applying the same care to yourself would be hypocritical.
10) Humans are resilient, adaptable and good
Working with people experiencing trauma, in great distress, learning to adapt to chronic illness, feeling suicidal, working on past abuse, overwhelmed with grief is surprisingly inspiring & uplifting - one of the best things is seeing every day the strength and basic good in people. This makes for a great experience in what can be a difficult world, keeping faith that we are part of something amazing and that we all deserve to be cared for and loved, and that includes you.
Article for 'Welldoing' Therapy Directory - May 2015
How can counselling possibly help me with my chronic physical illness? - 21/05/2014
As both patient and therapist specializing in working with people living with chronic health problems, I am passionate about the importance of addressing their emotional impact - in some cases this can be experienced as worse than the illness itself. Addressing the interaction between the body and mind is also vital when learning how to manage a chronic health problem - deny either’s role and physical and mental health can be adversely affected. Seeing a counsellor does not mean that your illness is not real or ‘all in your mind’, but that it affects the whole of you. Having worked with people specifically on coping with the following illnesses: diabetes, epilepsy, lupus, cancer, ME/chronic fatigue syndrome, fibromyalgia, chronic pain and endometriosis – here are 10 ways counselling can help:
1) Dealing with the emotional fallout of becoming ill
Getting a diagnosis of long term illness - usually following an uncertain period of ill health and searching for answers - brings fear, anger, uncertainty, sadness, distress, grief, anxiety and even shame. Suppressing these can result in depression. Counselling provides a safe space to acknowledge and express built up feelings, get reassurance that your feelings are normal and develop ways of dealing with them in the longer term. It is common to feel that you can’t fully do this with loved ones, as you try not to ‘worry’ them, and their own issues and opinions get in the way of hearing your experience fully.
2) Engaging with treatments
Medical treatments and programs such as pain, nutrition management or physiotherapy can require big lifestyle changes and a lot of effort to get the most from. If you are finding following advice difficult or feel resistant, seeking the support of a counsellor who specializes in working with physical health problems can help you work through your difficulties with these changes and consider any blocks you may have. Do you struggle to prioritize yourself; do you not see the point; are you finding it hard to make a new routine? This is often influenced by long held beliefs or roles, and therapy can be a helpful way to make sense of, and so get the most out of your treatment.
3) Reducing the impact of anxiety on symptoms
It is normal to feel anxious as you have tests and see specialists for diagnosis and ongoing treatment. However, sometimes anxiety can start to dominate, especially in conditions with uncertain prognoses, and this is not helpful to your healing or management of your health problem. Using chronic pain as an example, if we are in pain we worry, which tenses up the body, which then in turn can further increase the pain. It is also exhausting. In counselling we can find an outlet for our anxiety, a place to consider our thought patterns, understand the role of adrenaline, break the panic cycle and learn techniques to address anxiety. It is also a place to fully express our thoughts and feelings without feeling foolish or judged.
4) Adapting to limitation
One of the hardest parts of becoming chronically ill is adapting to the things that you can no longer do, which for the conditions listed earlier can range from the simple, such as not being able to do the weekly shop, to the heartbreaking: not being able to play with your child. Adaptation to limitations has two elements that therapy can usefully address: loss of the things you can’t do at all and gradual changes to the things that have such a severe payback in increased symptoms (even relapse) that you can helpfully choose to give them up in order to get a better balance and control of your pain and other symptoms. This can be a long process as we fight to hold on to how things were.
5) Grieving losses
Of all the emotional effects becoming ill can have, grief can be the strongest. The potential losses are diverse: from loss of career, friendships, ability to play sport - to self-esteem and purpose, and can lead to strong grief reactions with the same stages that follow a death: denial, anger, depression and acceptance. Sometimes people are baffled by the overwhelming feelings and tearfulness they experience and don't relate it to their health status. The counselling space provides the opportunity to make sense of these strong reactions and address them. Suicidal feelings are not uncommon in people with chronic ill health and having the support of a mental health professional can lessen isolation and so risk.
6) Learning to live in the here and now
When we become ill we think a lot about the past and what we have lost, worry about what the future will hold and fight our current situation by pushing through pain and fatigue as we try to keep going ‘as normal’, which can often make things worse. All these mean we are focusing on something other than the present moment, how we want things to be rather than how they are, which can add to anxiety. Acceptance - which does not mean that you like your situation but that you acknowledge its reality - helps people with chronic conditions to adapt to the situation they find themselves in and perversely, it is often when you stop fighting that you find you can move forward. Mindfulness is a growing therapeutic approach that some counsellors have trained in, which helps you to make choices about where you focus and to relate differently to your uncertain situation. See my article on ‘How mindfulness can help you cope with chronic illness.’ for more on this.
7) Dealing with changes in role and relationship problems
Illness can bring change that threatens the way we see our place in the world, making our ability to earn money and care for others more difficult, and in some cases impossible. Relationships can change radically. This can be emotionally devastating and hard to talk to loved ones about as we struggle to keep going in the usual way. Taking time for yourself in the form of therapy sessions to consider these issues and work out how you can make changes that will benefit your health and your relationships can really help.
8) Addressing other mental health problems
People with long term conditions can become depressed due to the strain of living with a debilitating illness, and if untreated, this can get in the way of effective coping. Some have other pre-existing mental health conditions that make living with physical health problems worse, so seeking counselling for these is a positive step. For example, if you have chronic anxiety or a childhood trauma that has not been addressed this will impact on your mood and coping, and so your health problem. A skilled counsellor will be able to help you to focus on each issue with consideration to your whole health.
9) Developing good self-care
Therapy can support you to consider how you can use chronic illness management strategies and understand how your life experiences and family role influence your attitude to looking after yourself. This can be fundamental to learning how to minimize your illnesses symptoms through making space for self-care and reducing stress to an absolute minimum. Graded activity, sleep hygiene and pacing will be familiar concepts to counsellors who have trained in CBT. In ME/chronic fatigue syndrome and other illnesses there is a lot of controversy and misunderstanding around the prescribing of cognitive behavioral therapy as a treatment. I believe this comes from therapists with inadequate knowledge trying to 'treat' it without understanding its physiology and physical basis, who have encouraged sufferers to push to relapse. There is also often confusion with ‘chronic fatigue’ or being tired all the time, which is a completely different thing. CBT, when offered by a flexible empathic therapist, is useful for living with all kinds of physical illness so long as it is underpinned by physiological understanding. Just as you wouldn't expect to reverse diabetes with psychological therapy, counselling people with the complex condition such as ME/CFS needs realistic goals about coping and management rather than promising a ‘cure’.
10) Being unconditionally heard, understood and accepted
As mentioned earlier, even with the best friends and family relationships in the world you probably won’t feel that you can be completely honest with your loved ones about how bad you feel all the time. A good counsellor is non-judgmental, deeply empathic and focused completely on you. This separation from the rest of life is one of the main reasons why therapy works. If you are considering counselling for help with your health issue, ideally get a personal recommendation from someone else with your illness, or when you make an enquiry, question them on their experience in your particular area. Just because they have listed ‘cancer’, ‘ME/CFS’, etc. on their directory page or website, don’t assume they have the experience or level of physiological and treatment knowledge you want, ask.
Enabled: 10 reasons why working for yourself can work for people with long term health conditions. 02/02/2014. Archived.
Why people say hurtful things to people with chronic illness and what we really want to hear. 24/04/2014 - archived.
Faced with yet another health issue? - 5 areas for coping - 10/06/2014 - archived
Modern Sleep Problems – 10 habits for a good night’s sleep. 13/02/2014 - archived
Guest Blog: 06/03/2014
M.E. / chronic fatigue syndrome and Depression written for 'M.E. myself and I' Blog - Living life in the slow lane with an invisible, chronic illness @theslowlane_ME on Twitter