Finding out more about your visible difference

It is important to know about your visible difference for many reasons: 

  1. To understand more about your condition, mark or scar and what it means
  2. To understand the effects of the condition on you and your life
  3. To understand any treatment options that might be available to you
  4. To help you to explain your visible difference to others

Coming to terms with medical jargon and understanding what treatment is available can be daunting and confusing. Sometimes it can be hard to get the information that you ask for from your doctor or other healthcare professionals, especially if you don’t feel very confident or assertive. People can sometimes feel like they are not in charge of their own situation or left in the dark and controlled by others.

Ask questions

You may find it useful to gather as much information about your visible difference as you can. This can give you a sense of being in control of your situation. Research shows that if someone is involved in their treatment, they are able to make more informed choices – this means they feel able to manage their situation better and can explain things to people more easily when asked about it.
Information can be gathered in many ways, by talking to medical professionals, getting in touch with support groups or organisations and researching literature and websites (although make sure the websites you look at have a good reputation). Changing Faces Practitioners can’t give medical advice or recommend treatment, but can help with talking it through and assist with composing questions giving you the tools to find out more and signpost you to useful places.

It can be helpful to write down any questions you might have about your visible difference. Then think about who might be able to answer these questions, or where you might find this information. You might find it helpful to write down any questions you have in a notepad or on your phone or tablet. You will have your own personal questions to ask so take a bit of time to reflect on these. Here are a few examples of questions to start you off – and who or where you could find some answers:

Will my condition, mark or scar improve over time? You could ask a specialist nurse or consultant

My condition is genetic. What are the chances that I will pass it on to my children? You could make an appointment to see your consultant and discuss seeing a geneticist.

I’ve heard about a new treatment, but am not sure if it’s for me? Try posting on a forum and seeing if others have any experiences. (Always ask a health professional before embarking on any new treatments however.)

What treatments (if any) are available to me? It’s natural to want to find treatments that will bring physical relief, improve the way you function or help you look how you want to. However, it is important to:

  • Know all the facts
  • Explore the risks
  • Acknowledge the limitations.

It can be difficult if you have placed all your hope in treatment. Try to stay balanced and remember there may not be a solution – in most cases, it is rare for a visible difference to be completely removed. Acknowledging this may make it easier to avoid disappointment or unhappiness with the results. Also, medical procedures are not necessarily the solution if you are struggling emotionally with your visible difference or finding it hard to adapt to it. You may need other support to help with this.

I decided I wanted more surgery when I was 28, I wasn’t in a good place in my life and I felt like my appearance was holding me back. In my mind I was convinced the operation on my face was going to change my life. I went in for surgery and when I woke up I touched my face and the operation had not gone ahead. There were some unforeseen problems with intubation. I was devastated. I guess I hadn’t realised up until that moment that the expectations I had were unrealistic. I spent a few weeks really struggling to come to terms with the surgery not going ahead. Eventually I realised that it wasn’t surgery I needed, I needed to change what was inside. When I got the all clear for surgery, I decided I wasn’t going to have the operation after all.. I finally realised – this is me, I can’t change it and it was time to accept who I was.

Kerry

When considering treatment options, you might find it helpful to think about the following questions:

  • “What makes this the right option for me at this time?”
  • “Am I doing this for myself, or trying to please others?”
  • “What difference will the treatment make to my life?
  • “What will it enable me to do that I don’t currently do?
  • “Am I being realistic?”
  • “Do I know and understand all of the risks as well as the benefits?”
  • “Do I know what to expect from the treatment?”
  • “How long will the recovery process take? What will I look and feel like after?”
  • “What alternatives, if any, exist?”
  • “Would it be helpful to speak with people who have undergone similar treatment?”

Family and friends may also feel that there must be a ‘fix’ – and may encourage you to have treatments. Being well-informed can help you to talk to them about their expectations too and it may be worth suggesting they get further support.

I’ve always found that surgery disrupts my life too much”: “I haven’t had surgery for 16 years, and then it was only as a necessity, though other people seem to think that plastic surgery will give me a perfect face. I had countless operations between the ages of 5 and 14 and found it really hurtful in my 20s when a very ignorant work colleague asked if I’d ever considered plastic surgery! I’ve always found that surgery disrupts my life too much – missing school, having time off work, etc. My plastic surgeon thought it was great that I was happy with who I am, realised the limitations of surgery and said to me ‘if it isn’t broken don’t fix it.

Alison

It is entirely your choice whether to have any treatment or not – and the decision should be something you feel comfortable and happy with. Timing of treatment can also be important – you may want to consider whether you are ready. Either way, finding out more will help you to consider what is best for you, help you feel more in control of your life and build your confidence when speaking with health professionals.

Visible difference

Read

Handling questions

Read

More people are using Changing Faces services than ever before. We want to be here for everyone affected by with a mark, scar or condition that makes them look different.

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