Ask the Nurse: Tips for maintaining your sense of self

In this month’s blog, we share our top tips to help you maintain your sense of self and live well with myeloma.

A myeloma diagnosis is life-changing and can affect you in several ways. Some people find it easier to focus on the practicalities and physical effects of myeloma – tests, hospital appointments, treatments, side effects and symptoms – rather than the personal and emotional impact. As a result, patients sometimes find that they have lost their sense of self and find it challenging to be a person rather than a patient. 

In this month’s blog, we share our top tips to help you maintain your sense of self and live well with myeloma. 

1. Acknowledge your feelings 

There is no right or wrong way to feel whether you are at diagnosis, remission, or relapse. It is OK to be sad, angry or worried, even if you have had myeloma for a long time. It is also OK to feel happy or excited when other people might not expect you to be. It’s also perfectly normal to find your feelings fluctuate from day to day, or to have the odd ‘off day’ where you feel less positive. Presenting positivity you don’t really feel can be exhausting and isn’t healthy. 

No matter what your feelings, it is important to acknowledge them. You can do this by talking to someone – your partner, friends, family, other patients or a Myeloma Information Specialist. You might find that talking about your feelings not only helps you but also helps those around you who are also finding things difficult. 

You could write your feelings down in a diary or blog. This can allow you to work through things and help you to recognise your successes and achievements as well as any challenges. Writing things down can also help you keep track of your feelings over time. 

If you notice that you are feeling anxious or depressed most of the time, you might want to talk to a professional. Your GP or healthcare team can help you with this. 
Sometimes, talking with someone who is not directly involved can allow you to express yourself in a more open way. Many patients find support groups, online forums, or helplines a great resource for this. 

2. Take control of the changes in your life where you can 

It can be difficult, but focusing on the things you can control or change, whilst working towards accepting the things you can’t, may help you to feel grounded and more able to cope. Try not to worry too much about what-ifs – instead focus on what you can do. This could include things like fulfilling certain important or fun daily activities for yourself, choosing what to wear or eat, or making sure you are informed. Remember to be kind to yourself. 

Lists, diaries or planners can also help you feel more in control. Using tools like these to make sure you know where you need to be and when, the questions you want to ask, things you want to do can empower you, keep you on track and help you separate the facts from the fears. 

3. Find what makes you feel good 

Planning and doing things you enjoy can make a big difference to your wellbeing. 

Although there may be things that you stop doing because of your myeloma, this can give you the time to explore new opportunities or take on a new hobby. 

Trying new things can also give you a sense of achievement and help rebuild your self-confidence. This could be writing, baking, learning a new language or spending time in the garden. Most people have a list of things they wish they had time for, so why not pick one and see if it is fun. 

For some people, feeling good means looking good. Organisations such as Look Good Feel Better offer a free service for cancer patients, teaching make-up and skincare, hand and nail care, and offering tips to cope with hair loss, scalp care and new growth, to help them feel better and boost confidence and self-esteem. 

4. Set your own pace 

Your motivation and capacity for different activities may change over time, due to your myeloma or your treatments. There may be times when you need to slow down, set a new pace for yourself, or do things in a different way.  

Try not to compare yourself to others or rush to get back to where you were before your diagnosis. Take your time and celebrate all your achievements – whether it is meeting someone new or going for a walk. You might find it useful to set a small goal every day, or have a long-term aspiration you work towards. 

5. Nurture your relationships 

Every relationship is unique, so the impact of myeloma will vary between couples, families, friends and work colleagues. For most people, however, dealing with a myeloma diagnosis can cause extra strain and change the dynamic of your relationships.  

This is especially true when you need extra support or care, for example if you have severe symptoms or are on treatment. Making sure you have quality time with your loved ones can help things feel more normal. This can be anything you enjoy together and can be adjusted to fit your energy levels – for example, watching a film together, playing a board game or telling stories. 

If you decide to take up a new hobby you can also get your partner or family involved. This might make your relationships stronger than they were before. 

For more information about living with the emotional impact of myeloma read our Infopack for living well with myeloma or watch our Psychological and mental wellbeing webinar

Get in touch with us through the Myeloma Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland) or by using the Ask the Nurse email service. 

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