Here people talk about the feelings and thoughts they have about osteoporosis and discuss their hopes and concerns for the future.
Feelings and thoughts about osteoporosis varied depending on how the condition affected their everyday life. People whose lives were not changed or only slightly changed, by osteoporosis said that it had not affected them too much emotionally. Others remarked that their initial reactions to their diagnosis had improved as they learnt more about the condition and its management. Positive thoughts and a pro-active attitude have helped others cope with physical problems.
Some people described feeling a range of emotions including:
- ‘lucky’ to have been diagnosed
- depression, sadness
- fear of falling and having a fracture
- lack of confidence following a fall and fracture
- loss of independence in old age
- fear of disability
- positive and confident
Many people said that osteoporosis had not affected them too much emotionally.
Several people who had been recently diagnosed felt ‘lucky’ to have had a diagnosis before developing serious osteoporosis-related health problems. Valerie was grateful that she was diagnosed before she had any major problems with it, like a serious fracture. Marylin thought that being diagnosed at a younger age gave her a better chance to avoid the deterioration of bone health that her mother experienced.
Initially a few felt shocked and depressed when given their diagnosis. Carol had been convinced that she was in good health and was shocked to learn she had osteoporosis. Other recently diagnosed people were still dealing with their emotions.
Sometimes diagnosis of an illness can lead people to review their life and priorities. In the case of Chris the impact of diagnosis led her to rethink her marriage and professional life.
Fear of falling and fracturing was voiced by some of those we talked to. Several had already stopped doing sports, like skiing or jogging, because they did not want to take unnecessary risks. Other changes in behaviour included not going out in hazardous weather; not lifting and carrying heavy objects; avoiding drinking alcohol and being careful when they were walking on pavements (see also Osteoporosis and exercise and Impact on home due to osteoporosis).
A few had been fearful at first of falling but as time passed their confidence had grown and their fear had diminished.
Others, like Christine, thought that it is important to not let fear stop her from being active. She strongly believes in the benefits of exercise to keep her bones strong. Robert remarked that initially he was very worried of breaking more bones and thought that the smallest movement could lead to a bone breaking. His attitude at the time was almost to wrap himself ‘in cotton wool’. But through learning more about the condition he realised that this is not necessarily the case. Those who have had a recent fall said that they had been shaken by the experience and it had made them feel very nervous. Elizabeth said that after her last fall that resulted in a fracture she is more afraid of falling and the possibility of fracturing again. Pat has had pelvic fractures at least three times and fractured ribs around six times. She, like others, said that her main fear is to fall when no one is around to help.
Self esteem may also be affected by osteoporosis. Physical problems, like carrying or lifting, left many of those we talked to with a feeling of losing control and realisation that they need to be dependent on others. Susannah found this situation particularly difficult to accept because it made her feel like an ‘old lady’. Jane, who is in her early forties, also said she felt like an ‘old lady’ because she had been used to being very active (see also Body Image of people with osteoporosis
Robert like others suggested that osteoporosis, if severe can affect people physically and psychologically. He thought that depression is one reaction that many people he had talked to experienced following a diagnosis of osteoporosis or a serious fracture. Robert said his personality had changed quite a bit since his fracture and he was now more cautious and reserved. He, like Jane was angry for a long time after he was diagnosed because of the long delay in getting a diagnosis.
But it is also important to bear in mind that feelings and emotions did often change for the better as people learnt to manage their symptoms or when they become less severe. Rose described how her outlook of life changed as she recovered her strength, mobility, self confidence and the intensity of pain dropped to manageable levels.
Several people said that negative emotions can be kept at bay by developing positive thoughts and a positive attitude to life. Victoria Iris believes it is important to keep active. She has been pleasantly surprised to realise how good and helpful people are towards her. Robert said that it also helps to keep a sense of humour.
Concerns about the future
The people we talked to had one main concern about the future; the fear of becoming disabled and dependent on others. Some also said that osteoporosis did make them think more about old age and the sense of fragility they now felt is related to both their age and illness. Laurence’s concerns were about the prospect of living with pain and his condition getting worse than it is now. He said, ‘I don’t mind dying, I think dying, that’s it, but I don’t like to be ill, don’t want to be ill’. For people living alone, the fear of losing their independence was a big worry because as Susan pointed out she wouldn’t want to become a burden to her children or anyone else.
But people were also optimistic about the future and based their positive thoughts on the advances in osteoporosis treatments, ongoing research, monitoring and self-care. Some people, like Carol and Iris, were doing everything they possibly could to help themselves to prevent a deterioration of their condition. But Jenny, who stopped taking medication due to severe side effects, worries about the future implications of this for her bone health. Others, like Neville and Robert, said that they ‘take every day as it comes’ and do not plan way ahead into the future as they would have done before they had osteoporosis.