Today’s guest post is from Dr. Morwenna Opie. Dr. Opie is a Clinical Psychologist who works at the Nightingale Hospital in London, UK. She specializes in supporting patients with chronic health conditions. Dr. Opie has a unique perspective amongst medical professionals on what life with dysautonomia is really like – she has been diagnosed with POTS secondary to Sjögren’s Syndrome.
Supporting Relationships Through Chronic Illness
As January is such a traditional time to assess our priorities, goals and wishes for the year ahead, it is worth dedicating some time amidst plans for nutritional tweaks and life-style changes to consider the important relationships in our lives (with partners, with friends, and with ourselves). This is especially pertinent for people dealing with the additional strains of chronic illness, where feelings of isolation and relationship difficulties can be a major part of the disease burden. Many patients cite ‘brain-fog’ and related cognitive difficulties as the worst aspect of their illness, in part because if effects their ability to interact effectively with others. Fatigue and physical difficulties also create enormous changes in how we are able to spend time and share experiences with others.
Healthy, supportive, and fun relationships can be our greatest asset in shaping a happy and fulfilling life, and this is especially the case when opportunities for physical activity are more limited. Equally however, maintaining unhealthy relationships can be more toxic to our health as those chocolate binges or caffeine or whatever else we might have resolved to do away with this month. The evidence continues to accrue demonstrating that social stressors and anxiety takes their toll on our immunological functioning, and all aspects of our physiology, with the potential to cause a vicious cycle of deteriorating physical and mental health – and relationships. All friendships, even at the best of the times, need ongoing review and nurturing to be most rewarding. There are times when relationships need to be recognised as damaging to the low-stress and positive environment we need to cultivate to maximise our health, requiring major changes or severance. A positive aspect of being unwell can be the clarity that comes about what is important and where our priorities lie.
Life partners or parents also experience grief, loss, and frustration at seeing their loved-ones at the mercy of a cruel and unpredictable illness. Life can be challenging in many ways, and with one partner ill, significant financial and practical burdens fall on the other-half. Partners with a chronically ill spouse are, for example, six times more likely to be clinically depressed. The ensuing exhaustion can prevent the clear communication required to prevent a negative spiral of misunderstanding and misinterpretation. Such ‘mind-reading’ is at the heart of many a relationship break-down that I have worked with.
Dysautonomia Patient: “It’s been a tough day today fatigue-wise.”
Healthy Partner: “Yes, I feel exactly the same, totally pooped.”
Dysautonomia Patient: “Are you worried about me?”
Healthy Partner: “No.”
I imagine many can smile with recognition at the first quote above about tiredness/fatigue. There is significant potential here for a row – the dysautonomia sufferer feeling that their fatigue isn’t sufficiently understood as different to ‘normal’ tiredness, the healthy partner feeling that their genuine grievances aren’t recognised or supported. Happily, there is also opportunity here for loving support, a connection in shared-experience and to engage in appropriate choices from activity menus (see below)… and possibly a discussion around what true fatigue is like at a later date! The second quote represents another oft-experienced area of misunderstanding, rather typical of male-female miscommunication. The healthy partner’s “no” response may express his belief that all will be well and his partner will conquer all – she may well interpret it as him not caring. Sorting these requires regular and clear communication at appropriate times, often in a different or allocated environment, when both parties are as well fed and rested as possible.
Some tips for life partner relationships:
- Communication is king. But within limits. A daily check-in (possibly a rating out of 10) is good, but otherwise allocate specific clear times to update them on testing, meds, symptoms, etc., so they are informed but not constantly barraged (it’s not as interesting to anyone else as it is to us, even loved ones!). Always check-in with how your partner is doing too and what their principle stressors are, or have a separate regular time for this.
- Allocate times when health-chat is off-limits and you celebrate other aspects of yourself and your partner.
- Health can be so unpredictable (if only there was an App you could check how you would feel the next day, like there is for weather). If you plan time together it is worth having a few ‘activity menus’ based on what you can manage at different times so if you are in a dip there are alternative ideas up your sleeves and needn’t dwell or be stuck with indecision but crack on with another plan you can both enjoy.
- Humour is also king. If there are issues to bring up this can often be done playfully. An example is to present a multiple-choice quiz, e.g.:
When I experience fatigue it feels like:
- A bit tired because I’ve been lying down all day
- Tired like you feel after a busy day and going to the gym
- Tired like I haven’t slept for 48 hours and prior to that I had run a marathon
- Tired like all of the above plus feeling like the tired you feel with the worst ever flu
Friendships are the life-blood of life, and equally require maintenance. It is worth remembering that there are friendships for different times, and for different purposes. They don’t necessarily need to ‘get’ everything about us (including our health challenges) to be valuable, worthwhile – and cherished and nurtured. It is worth remembering if you do feel a need to discuss your friendship to stay very focused on what outcome you want to achieve. Try to also celebrate the good parts of your friendship when you do so, and take ownership of the discussion with those ‘I’ statements (e.g. I feel, I sense) which as so much less confrontational (and true!) that saying “you make me feel.” Sometimes friendships do run their course, or become more unhelpful than helpful. Generally we know in our hearts when this is, but clarity can come in many situations by asking ourselves “what would I advise a good friend to do in this situation?”
Remember too that the friendship that you have with yourself is one of the most important to maintain. It will be life-long after all! When I try to socialise my clients to the form of therapy that I practice, Cognitive-Behavioural Therapy, I find the most useful explanation is that it is a strategy to assist in being a good friend to yourself (we are surprisingly bad at this on the whole!). I think that it speaks volumes that at a time when funding for healthcare worldwide is under extreme strain, that there is increasing all recognition that all manifestations of physical illness requires CBT support to maximise treatment effectiveness. I would encourage everyone, but especially anyone with physical health issues, to become familiar with this paradigm either through one-to-one therapy or through reading. We can get caught in all sorts of traps, such as feeling that if we are off work sick that when we do have moments of feeling better that we don’t really deserve to capitalise on that, or feel guilty (a very unhelpful emotion) if we do. Or feel that our healthcare needs cause such an expense in time and finances that we can’t allow ourselves little treats. Or worst of all that we need to beat ourselves into activity by reminding ourselves of our shortcomings and incapacities. When we are suffering, tired, and struggling, we can get caught in unhelpful thinking patterns, and changing this, and our behaviours, can have such positive consequences for us, our health and our relationships. We all require good self-care skills, and we all need to be as good at remembering our skills and positive contributions as our slips. Also we need to be aware that accepting help at times, and being thankful for it, is an important aspect of generosity.
I wish you all good health, happy, flourishing relationships, success with all your resolutions, and all good things for 2014!
Dr. Morwenna Opie isnd hasa registered Clinical Psychologist and accredited CBT practitioner, specialising in anxiety and mood disorders, and in supporting patients with chronic and acute medical issues. She has practised in both New Zealand and the UK, a been based for the last 7 years at the Nightingale Hospital in London, UK. She experienced a dramatic deterioration in her own health in 2011 following surgery for skin cancer, and has since been diagnosed with POTS and Sjögren’s Syndrome. She also juggles caring for two small children, a spaniel, a husband, and herself.by