There are two things you need to know about me. Firstly, I am a health psychologist, with a specialist interest in behaviour change, implementation, and impact. Secondly, through a series of deep vein thromboses (DVTs) beginning with a post-partum iliofemoral clot in 2008 and followed by an unsuccessful crossover bypass graft in 2010, I have been living with significant post-thrombotic syndrome for the last nine years. Symptomatically I have ongoing and often disabling pain, swelling and leg heaviness, all exacerbated by physical effort. Medical management involves lifelong anticoagulation (after a further DVT in 2016) and full-length class II compression stockings.
The reason for outlining the above is to set the scene for a commentary on the psychology of being a patient with long-term venous issues. This is, of course, heavily caveated by the fact all patients, presentations, diagnoses, aetiologies and prognoses are different, and that the experience of chronic venous issues is not necessarily qualitatively different to other ongoing illnesses. Acute conditions may be less corrosive psychologically than more exhausting, life-changing chronic conditions, but there is no “one size fits all” reaction. Understanding such psychological challenges can help clinicians to improve the care interface, and in turn improve longer-term patient wellbeing.
Health psychology—the branch of psychology focused on preventing ill health and managing the experience of illness— tells us there are a range of cognitive and emotional factors underlying how we deal with our health. Attitudes and beliefs about the severity of the condition, its cause, how certain (or uncertain) the future is and how much control we have over whether we “get better” all influence how we respond to being ill. The “answers” frame to us what it means to live with a condition and how substantially we may need to readjust our lives. They also influence (and are influenced by) our relationships with healthcare professionals.
Psychological challenges can emerge before or after diagnosis, and can grow or settle over time. An initial diagnosis can be traumatic, especially if its onset is unexpected and the extent severe. The diagnosis of an acute venous episode in itself is not suggestive of longer-term psychological problems, but even when physical symptoms resolve, the psychological scars—such as anxiety about reoccurrence—can persist. Similarly, whilst we can cope with the pain of thrombosis for a short time, coping longer-term with a painfully debilitating, unresolving or deteriorating condition exhausts us mentally and physically; nine years on, for me it is a constant balance between stopping due to pain or choosing to live in pain.
The uncertainty which characterises ill health can also take an enormous psychological toll. Where something is caused by something obvious (eg. post-surgical DVT), the emotional adjustment is likely to be more straightforward than something unexpected (eg. unprovoked DVT). Similarly, conditions with clearer clinical expectations offer more certainty about “what life holds” than those with an unknown diagnosis or endpoint. Whilst clinicians routinely deal with uncertainty (eg. a 50% chance of ulcers… a high chance of recurrence… etc.), for patients the continued monitoring needed to assess whether ones condition is worsening can lead to agonising hypervigilance. For me, I must be ever mindful about new symptoms (indeed it was a new calf pain last year which alerted me to the most recent DVT) and skin changes which may mark the start of ulceration. The risk is that mindfulness transcends into anxiety; clinicians and patients must work together to assess appropriate and proportionate levels of monitoring.
Self-identity
Arguably a more hidden but intense psychological consequence of ill health is the impact on identity. Our self-esteem is a function of our self-image and our ideal self. Unsurprisingly, when we become ill it challenges our sense of who we are, a situation complicated by visible symptoms which also influence our social image. Self-esteem can drop as we struggle to reconcile our new “ill” identity with who we were before, and may even enter a grieving process if a loss is permanent. For me, my thrombosis was life changing, and my identity changed from “active young woman” to “disabled new mum” in a matter of weeks. My limp, once considerable but now far reduced is a visible notification to society that something is “wrong”. Over time I have absorbed the pain, limp and exhaustion into who I am, and I am lucky that I have a formal diagnosis by which I can explain my condition to others (many patients do not have this luxury and may also struggle to be believed or supported).
Ultimately, we have our own internal picture of who we are as a person, and when the sands shift we are forced to integrate, rebut or work hard to ignore the new “us”. To live with a long-term painful condition you sometimes have to make it the least prominent thing about you and find ways to minimise the physical and psychological fallout. Put simply you try to be you again. Personally, I have managed to readjust my self-image, but it is against the bittersweet backdrop of a world moving at a pace I cannot match.
Taken together, it is not surprising that depression and anxiety are commonplace in long-term conditions, and more severe post traumatic reactions can develop if our individual coping mechanisms are continually overwhelmed. For the patient trying to continue functioning at home and at work, it can be a constant and exhausting battle to maintain equilibrium. We humans are resilient beasts, but we are not unbreakable. We look to our healthcare specialists for knowledge, support, action and measured hope. Whilst medical management can only ever ameliorate the physical symptoms, the supportive process of a consultation arms us to continue the fight beyond the hospital walls. I am told I am “bloody minded” enough to keep fighting but even good patients struggle. Venous conditions can be demoralising, disabling, disenfranchising and isolating.
Ultimately the impact of a condition is, or should be, judged at the level of the patient and the effect it has on their life. Thus, being “well” is as much about physical improvement as it is about the patient regrouping psychologically and socially in a meaningful way. To those clinicians reading this—if you can understand the psychological toll from the patient point of view, you will already be doing far more good than you realise.
Julie Bayley is a HCPC Registered Health Psychologist at Coventry University, Coventry, UK
Thank you for this article. I needed this.