Changes to body image are an important part of post-transplant recovery, and they can mean different things to each individual patient. Some side effects of treatment that affect body image can be expected. Other changes are not, and this can be difficult for patients and families to cope with.
In most cases, body image will return to what patients feel is normal, but in some circumstances the change is permanent. It’s important to know what can affect body image, and encourage patients to discuss their concerns so support can be given.
In today's blog, Hayley - Anthony Nolan Lead Nurse - discusses body image issues and where you can go for help.
What is 'body image'?
Interpretation of what body image is will vary - but a simple definition is the emotional attitudes, perceptions and beliefs to our bodies, which include how others see our bodies, too.
Are there common issues patients are concerned about with their body image during transplant and treatment?
People experience so many physical changes after a transplant. Some of these changes are not visible, such as fatigue, but some are clear, and for some people, very difficult to cope with. One of the main concerns before a transplant seems to be hair loss. However, we know this becomes less of a concern once someone is at the other side of their transplant as other; perhaps more physical side effects take priority.
Weight loss due to poor appetite, or weight gain due to steroid treatment, can also be a tricky issue.
Some people also experience skin changes due to Graft Vs Host Disease (GvHD), such as pigmentation changes, rashes and extreme dry skin. Skin is very sensitive, and if it’s badly affected by the GvHD, then some of these changes can be permanent. As the skin thickens around the joints it can cause restrictions which make some movements difficult.
Many people are advised to use steroids over a prolonged period of time. This type of medication can cause a number of side effects, including weight gain and excessive hair growth, particularly around the face. Steroids can sometimes cause your muscles to weaken, meaning weight loss. This can be particularly difficult to get used to, and may mean that you need to buy new clothes to fit your new shape.
Do you find that male and female patients tend to have different concerns, or that they need specific support?
It’s wrong to assume that men don’t worry about hair loss, and that only women worry about their looks. Altered body image is important to men and women, so I always approach them as individuals rather than make an assumption based upon their sex. Men don't tend to ask for wigs, but that doesn’t mean they're not concerned by hair loss.
Men and women can experience loss of libido and problems with sexual function, and again the ability to talk about it isn’t always based on gender - more on personality type. Very few people are happy to talk openly about sex, libido and relationships, so it’s even more important that I try and bring this topic into conversation; this gives people permission to discuss what they might think isn’t important for their transplant team to know or talk about.
Is there a particular point in treatment and transplant when you find patients are most affected by body image?
In my experience, changes to body image post-transplant can be more difficult for patients to cope with. This is because they will have never experienced some of the side effects that affect body image, such as GvHD of the skin, and will not be used to long-term treatments for this, such as steroids. Patients will also not be used to the amount of time it will take for more common symptoms to improve. Loss of appetite and weight loss can be an ongoing concern for months after a transplant.
Symptoms that develop after one year post-transplant are called 'late effects'. At this point, we tend to see patients begin to discuss loss of libido and sexual function. This might be because other symptoms are improving and life is returning more to ‘normal’, and these concerns are then being highlighted.
Do you find that family and partners are affected by changes to the patient’s body image?
Body image isn’t just about how you look; it’s also about how it makes you feel. Changes in how someone's body looks can have a knock-on effect on their confidence - for men and women - and change their perception of themselves within a relationship or family.
Whether you were the person who worked, the main carer for your children, or an athlete - having a transplant (with the fatigue, the weight loss, etc) can mean that you lose a bit of who you are in the family. Your role may be changed.
Family and partners can see how these things are affecting their loved one which sometimes affects the dynamics and balance of the relationship. And obviously this is linked with intimacy and libido.
Do patients find it difficult to talk about their body image concerns? And why do you think that is?
Yes, some do - I think this can be for a few reasons. Some people feel bad for worrying about something that, for others, isn’t a priority. The focus normally can be the success of the transplant, managing GvHD and surviving week to week and month to month, so little time is given to how the changes in your body have affected your confidence or self esteem.
There can almost be an acceptance that 'this is the consequence of my treatment; I shouldn’t complain.'
I think it also takes a lot of courage to say, 'I don’t like looking in the mirror', as it’s very personal. You have to be quite motivated to talk about it, when often patients in those circumstances are not motivated and feel quite low.
That's why transplant nurses and the wider healthcare team should be aware and encourage patients to open up and have these types of conversations. I think this is really important, and something we don't talk about enough.
Is support provided by the NHS, or are there any specific charities to help patients with their body image concerns?
Most hospitals provide their own wig service. Some hospitals will have support groups, or trained counsellors that can help specifically with body image issues, but it will vary from trust to trust. My main advice is to ask your clinical nurse specialist (CNS) what's available.
Macmillan and The Teenager Cancer Trust have good information on their websites, but this is for more general after-cancer advice. There is also ‘look good feel better’ which is a charity that offers free make-up and beauty advice to women affected by cancer. Unfortunately, there's not very much that's male specific or transplant specific.
Meanwhile, Anthony Nolan provides grants for patients who've had a transplant - we know this has been used for patients to buy clothes when they have lost so much weight that their clothes do not fit them. You can download an application form from our website, or ask your CNS to apply on your behalf.
Unfortunately, some of the body changes that happen to patients after their treatment and transplant are unavoidable. How do you support your patients in preparing for and coping with this lack of control?
By building a good relationship with patients and families and encouraging good communication. Bringing awareness of what the potential side effects are and identifying them early, to allow patients to prepare for what might happen.
Early interventions like peer support, or more formal things such as counselling, are also very helpful for many people.
The most important message is that perception of body image is very individual; if something is concerning you, you should speak to someone like your CNS or another healthcare professional. Don’t de-prioritise your needs. A positive body image is key to self-esteem, confidence, and maintaining relationships.
The main goal of transplant recovery is to get you back to being you again - so to help achieve this, body image should be discussed.