In the earliest stages of recovery, many stem cell transplant recipients focus solely on their health and whether the transplant has been a success. During this time, you might have found you didn’t have a lot of confidence in your body and that any slight change, blemish or niggle was a sign of something more serious. As a result, you may have become more in tune with your body and pay lots of attention to how it looks and feels.
As your recovery progresses, these fears of something more serious developing have hopefully lessened, but you may have concerns about how your body looks and responds to physical activity.
Changes to body image are an important part of post-transplant recovery, and they can mean different things to each person. You might not be happy with parts of your physical appearance now or you might be worried about how people will react when they see you again for the first time.
Our body image is the way we think about ourselves and how we think we appear to others when we look in the mirror.
‘I had loss of hair, massive weight loss, and I looked quite frail. Friends and family just don't know what to say to you when they see you like that; you look so different to what they've known. But you are still you. I don't think I really prepared myself for the impact of it.'
Rob, who had a transplant in 2014. You can read about his experience in our body image blog.
Your body has probably undergone many changes during your treatment and now in your recovery. You were probably expecting some of them, as they affect most transplant recipients, but others may have come as a surprise and can be more difficult to get used to.
You may have already experienced:
Hair loss – Most patients lose their hair shortly after starting chemotherapy.
Weight loss – For a variety of reasons, eating enough food to sustain a healthy weight can be difficult, especially in the first few weeks after transplant.
Skin changes – GvHD can cause skin to become dry, blotchy or develop a rash. Some treatments can also cause scarring.
Weight gain – Long term use of steroids (used to treat GvHD) can cause weight gain.
Some of these changes are only temporary and many patients begin to feel more like their normal self as their recovery progresses. However some changes, such as those involving fertility and early menopause, can be very upsetting and have a big impact on your future plans. If you have any concerns, it’s important to discuss them with your medical team so that they can provide both practical and emotional support.
When we’re low in confidence, it’s easy to dwell on the things that we think are wrong and forget about the things we like about ourselves, or that are going well.
It might be hard to believe, but you will probably find that people who don’t know you are less interested in your appearance than you might think.
Preparing yourself to be ready for how people might talk to you will make you feel more confident and help you stay in control of the situation. You may find some of the following suggestions useful:
Don’t push yourself – It will take time to feel like you are getting back to normal. At times the thought of seeing people and talking about what you are going through might seem daunting. Start off by seeing a few close friends in a place you feel comfortable, and then slowly build up to bigger social situations when you are ready.
Be assertive – Take control of the situation and only talk about things on your terms. If someone asks you how you are, be upfront and tell them what you would like to say. Try to have the confidence to say you aren’t comfortable talking about certain things and change the subject to something else. You’re in charge.
Comedy – If you feel comfortable making a joke of your situation, it can often help diffuse any awkwardness there might be around certain topics.
Strange questions – Someone, especially a young child, could easily ask an inappropriate question about your appearance at some point. Have a think about how you would want to respond now so that it doesn’t surprise you at the time.
If concerns about your body image are causing you stress and anxiety, you may benefit from talking to a therapist about it. They will work with you to build up your confidence and help you find new strategies that support you in having a more positive outlook. You can find more information in our talking therapies section.
If you decide you would like to try wearing a wig, they are often available through your local hospital, free of charge. The Little Princess’s Trust also provides free wigs to children and young adults.
‘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 patients as individuals.'
Hayley, Anthony Nolan Lead Nurse. You can read about body image from a clinical perspective in our blog.