Emotional care

Coping with the diagnosis

Being diagnosed with myeloma affects everyone differently. At first you might be overwhelmed, in shock or feel numb. Sometimes strong emotions may catch you unawares. It is important to understand that this is a natural reaction and part of coming to terms with a diagnosis. Some may feel a sense of relief when they are diagnosed as it explains all the symptoms they have been experiencing.

You might ask yourself “Why me?” and want to find something or someone to blame – again this is completely natural. However, there is no answer to this question. You may feel as if there is nothing you can do and that everything is out of your hands. Finding out all you can about myeloma and your treatment can help to combat these feelings. There are also many things you can do for yourself that will improve your quality of life and this can be a positive focus for you.

Emotional support

Emotional support is important in helping you to cope with myeloma. It is very easy for patients and family members to feel isolated and strong emotions often make it difficult to discuss worries or fears. Talking to someone who understands what is happening can ease feelings of isolation.

Many patients find their specialist nurse is a good person to talk to. You can also call the Myeloma Information Specialist on the Myeloma Infoline on 0800 980 3332 from the UK, or 1800 937 773 from Ireland, for emotional support, practical advice and a listening ear. The Infoline is open from Monday to Friday, 9am to 5pm, and is free to phone from the UK and Ireland. From outside the UK and Ireland, call +44 131 557 3332.

Depression and anxiety

Coping with myeloma can be very demanding psychologically and emotionally, whether you are a patient, carer or family member. Although sometimes you may feel optimistic, there may be other times when you feel anxious, afraid or depressed. These feelings are not a sign of weakness and you should not feel ashamed or guilty about them. It is very important to allow yourself to have ‘off’ days.

It is important to recognise the symptoms of depression and anxiety and to discuss them with your GP, hospital doctor or nurse. There are several options for treatment, including counselling, drug treatments and complementary therapies. Your doctor will know which are appropriate for your situation and can refer you to a counsellor and / or prescribe an effective anti-depressant treatment.

Sexual relationships

Sometimes sexual relationships change after a diagnosis of myeloma. You or your partner may feel less keen to have sex. There can be many reasons for this: you may feel too tired or physically unable to enjoy a full sexual relationship; stress and anxiety can often cause a loss of sexual desire (libido); or you may feel that sex is not important if you are coping with a serious illness. Many drugs can also reduce sexual desire.

If a sexual relationship is important to you, do talk to your partner about the way you feel, even though you may find it difficult to start the conversation. It is easy for people to feel rejected when a sexual relationship changes or ceases. Try to discuss with your partner what level of intimacy feels comfortable and, in time, you may gradually return to a more physical relationship.

Don’t be embarrassed to talk to your GP, hospital doctor or nurse about problems with your sexual relationship. They are quite used to this sort of discussion, even if you are not, and they may be able to prescribe a treatment that can help.

 Talking about myeloma