Finding out about treatments

We use the word ‘treatment’ to refer to anything that you might need to have to help your condition, mark or scar. This might be an operation, creams, physiotherapy or tablets. What treatment you might need depends on what you have. Having any treatment can feel difficult as it can sometimes stop you doing things you want to do, or mean you have to go to the hospital more often.

Like lots of things, there are two sides to this. For some people, treatment can make a big difference. Here are some of the things people have said about their treatment:

“I’ve got burns on my face and body and I’ve had lots of operations. I still have lots to come. I won’t ever look like I did before the accident, but I still think it’s worth it.”

“I had a cleft lip when I was born. It’s been repaired, but I have a scar above my lip and my nose is a bit flat. I will have some ‘touch up’ surgery later, though you’ll always be able to tell I’ve had a cleft.”

But, sometimes people have treatment which doesn’t work as well as they’d hoped. This can make them disappointed, upset, or even angry.

“The operations are painful and it gets to me sometimes. And, sometimes I feel like it’s not worth it. I talk to dad about it. He says it’s ok to feel upset. He’s good to talk to.”

“I get angry because I’m sick of having to use my cream. I have to put it on each day and it’s annoying”

Things you might not know…

  • Some treatments work best at a certain age
  • And some take years to complete
  • There isn’t a treatment for every problem
  • No treatment will work every time
  • More than one type of treatment may be needed
  • Treatment can often make a big difference
  • But it can’t always change everything or make things how you might expect
  • Treatment might affect you in other ways.

When thinking about having treatments, it is worth weighing everything up. Here are some questions you could research. Try asking your family first. Then, later, you might need to ask a GP or a specialist or other people (or if you like, your parents or carers can ask for you). It might help you to write down the answers to these questions to help you remember and to decide what further information you might need.

  1. Have I had any treatments? If the answer is Yes, answer the questions below. If the answer is No, go to question 2:
    • What were the treatments?
    • What happened in the treatments?
    • What did the treatments change about me?
    • What did the treatments not change?
  2. Should I have a treatment (or more treatment)?
    • Is there a treatment suitable for me?
    • What is the name of this treatment?
    • What will happen?
    • Who will I see? Who will be doing the treatment?
    • How long will it take? How many times will I need to go? Will I miss school or other things?
    • Is now the right time to have the treatment?
    • What difference will the treatment make?
    • What will the treatment not change?
    • What other effects might there be, like scars or other changes? Will it affect other things like moving, talking, eating, sleeping, hearing or seeing?
    • Will I have to have follow-up appointments and, if so, what will happen?
    • Is there anything else I can think of? How do I feel about it? What else do I need to know?
    • Do I want to have this treatment?

Remember – even if you say ‘yes’ or ‘no’ now, it’s ok to change your mind later.

It can be difficult to decide, but working through all the questions might help you to think about it a bit more. And talking to your family and friends can also help to work out what you want to do.

Finding out about my visible difference

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Looking and feeling different

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