Caregiving

When someone in your life has scleroderma, it can cause uncertainty. Find out ways you can take back control. 

4 min read

Man with scleroderma with wife

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.

3 in 5
of us will be caregivers.3
"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."
— Juan

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.

Scleroderma caregiver outside

Your emotions are important

First things first, you have to look after yourself. This is not selfish and should help you provide better care.

Man with scleroderma and his wife

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.