Did you know?
If you are supporting someone with scleroderma, you will probably be classed as a ‘caregiver’ by doctors and other healthcare providers. This is important to ensure you gain access to any support (emotional, financial etc) that you might need.
You are an expert by experience
The wealth of knowledge and experience you gather providing support for someone else is enormous. Doctors and nurses may have all the medical background about the disease and its treatment, but you know the details of your personal situation.
You may not realise it, but by helping someone with scleroderma, you can have an incredible impact on their life and happiness. Not only can you provide emotional and practial support, you can also have a positive impact on:
- How scleroderma affects someone's outcomes now and in their future.1
- Helping people to stick to their medications and healthcare advice.2
But it’s also important to look after yourself. Finding ways to do this will ultimately benefit both of you.
"I think the disease has brought us closer together. She’s a loving friend and wife. She fills me with warmth every time I see her, she’s the love of my life."
Everyone’s role is different
You may be supporting a partner, or perhaps a parent or child. You may be a relative, friend or neighbour. The care you provide may vary.
Your emotions are important
First things first, you have to look after yourself. This is not selfish and should help you provide better care.
Take care of yourself
Your own well-being is important, but all too often forgotten. Find out how to refocus on yourself.
Support can help
Finding the right support is crucial. This has to be able to work for both you and your loved one.
Your health
Looking after yourself is important, don’t ignore what your body is telling you.
How to reduce stress
Writing down your experiences and practising mindfulness might benefit your health.