Emotional and psychological changes
Everyone deals with a diagnosis of myeloma differently and throughout the course of their disease, a patient’s thoughts and coping abilities may change. Often patients describe the experience as being like an emotional rollercoaster. Healthcare professionals supporting patients through the emotional changes of a myeloma diagnosis should reassure patients that there is no right or wrong way to feel and feelings may be transient or longer lasting.
Some people find a sense of relief when they are diagnosed as it provides an explanation of the cause of their symptoms. However, once the shock of the diagnosis has passed, they may go through periods of anger and resentment, anxiety and fear of what lies ahead, sadness at the sense of loss of life opportunities, and worry about how this might impact on family and friends.
Patients going through treatment may experience emotional and psychological changes as a side effect of their therapy or as a result of disease or treatment-related pain, insomnia or fatigue. Being part of a ‘vulnerable’ group because of a health condition can also cause anxiety, for example due to risk of infection or bone fractures for those living with myeloma.
Those who have gone through several periods of relapse and remission may become concerned that their treatment options are becoming limited and start worrying about advancing disease, death and dying.
Some changes however are positive and may, for example, improve relationships between patients and their families and friends or help patients reassess the priorities in their life.
Watch this video on the emotional effects of living with myeloma:
Wherever possible, patients should have the opportunity to talk through such issues with their team. Skills such as active listening, allowing silences and picking up on cues are fundamental during any clinic or consultation. The Myeloma UK Wellbeing Tool can be used by patients to provide the space to start thinking about their emotional wellbeing. Patients and their families may also benefit from attending support groups and talking to others who are in a similar situation.
For some patients, the psychological and emotional changes become deeper and develop into anxiety and/or depression. These can manifest through the following symptoms:
Depression (usually present for >2 weeks)
- Low mood
- Lack of enjoyment of life and usual pursuits
- Tearfulness, irritability, or impatience
- Feelings of guilt, self-blame, low self‑esteem
- Isolation and avoidance of social events
- Unexplained physical symptoms,
- e.g. sleep changes, poor appetite,
- weight loss and lack of energy
- Suicidal thoughts
Anxiety
- Restlessness or agitation, poor sleep
- Poor concentration
- Headaches, sweating and dizziness
- Tachycardia, chest pains
- Feeling tense, unable to relax
- Intrusive thoughts, fearing the worst
- Compulsive or avoidance behaviour
As a means of picking up signs of emotional and psychological changes, Holistic Needs Assessments (HNAs) should be carried out, most commonly by nursing staff or support workers at key points in the myeloma treatment pathway. Macmillan HNAs and myPOS are two examples used in myeloma clinics. These assessments provide a basis for discussion and can be complimented by more widely recognised anxiety or depression tools e.g. the Hospital Anxiety and Depression Scale (HADS), alongside a referral to a clinical psychologist, mental health team or counsellor where necessary. If there is a concern about suicide risk, urgent referral to a mental health practitioner is needed.
Read more about how to support patients with emotional and psychological changes in our Myeloma Nurse Guide. Table 1 summarises the NICE recommended model of professional psychological assessment and support for people with cancer, outlining that all health and social care professionals should have some level of training and tools to assist patients, particularly at key points in their experience: diagnosis, start/end of treatment, and end of life.
Table 1: NICE recommended model of professional psychological assessment and support for people with cancer.
| Group | What should be assessed? | Intervention | |
|---|---|---|---|
| 1 | All health and social care professionals | Recognition of psychological needs | Effective information giving compassionate and general psychological support |
| 2 | Health and social care professionals with additional expertise (nurses, doctors, allied HCPs) | Screening for psychological distress | Psychological techniques such as problem solving and use of standardised screening tools |
| 3 | Trained and accredited professionals | Assessed for psychological distress and some diagnosis of psychopathology | Counselling and specific psychological interventions such as anxiety management and solution focused therapy, delivered according to an explicit theoretical framework |
| 4 | Mental health specialists | Diagnosis of psychopathology | Special psychological and psychiatric interventions such as psychotherapy including cognitive behavioural therapy (CBT) |
Self-management strategies
Emotional and psychological changes can be very personal and as such, what works for once patient may not work for another. Some examples of how patients and their families can help care for themselves include:
- Talking to trusted family, friends, or healthcare professionals
- Talking to other patients e.g. through a support group either online or in person
- Maintaining a healthy diet and taking regular, gentle exercise
- Continue with hobbies and social activities wherever possible
- Try complementary therapies and other support services
- Continue seeking support for beliefs and values