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Caregiving 

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

4 min read

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 practical 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.

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of us will be caregivers.3 

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.

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"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.

Your emotions are important

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

Emotional wellbeing
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Take care of yourself

Your own well-being is important, but all too often forgotten. Find out how to refocus on yourself.

Focusing on you
Reflection

How to reduce stress

Writing down your experiences and practising mindfulness might benefit your health.
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  1. Luttik ML, et al. The importance and impact of social support on outcomes in patients with heart failure. J Cardiovasc Nurs 2005;20:162–9.

  2. Trivedi RB, et al. The influence of informal caregivers on adherence in COPD patients. Ann Behav Med 2012;44:66–72.

  3. Carers Trust. Why support us. Available: https://carers.org/ [Accessed December 2021].

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"I think it's in my nature just to be there and be supportive to Mike. He's my husband, and that's what I want to do. We are a team and we do everything together and we talk about everything, the good and the bad." 

– Alison