When someone you are close to is diagnosed with Addison's disease or adrenal insufficiency, the diagnosis affects more than the person with the new diagnosis.
Partners, parents, children, relatives, friends and carers often become an important part of the support network that helps keep that person safe and well, as well as feeling the impact themselves.
Am I a carer?
You may not think of yourself as a "carer". However, if you help a family member, partner or friend because of their illness and they could not cope without your support, you may already be fulfilling a caring role. The care you provide is often unpaid, but it is incredibly valuable.
Whether you help with medication routines, accompany someone to appointments, support them during illness, learn emergency procedures or simply provide reassurance, your contribution can make a significant difference to their health and wellbeing.
Whilst this responsibility can feel daunting, knowledge and preparation can make a life-saving difference.
Why Carers are so important
Carers are often the people most likely to notice when something is wrong.
Carers frequently identify early warning signs that may otherwise be missed. In adrenal insufficiency, early recognition can be crucial because prompt action may prevent a situation from progressing to a full adrenal crisis.
Your role may include:
- Recognising that someone is becoming increasingly unwell.
- Supporting Sick Day Rule management.
- Helping organise medication and emergency supplies.
- Administering an emergency hydrocortisone injection if necessary.
- Communicating the person's steroid dependence to healthcare professionals.
- Advocating for appropriate steroid treatment during surgery, illness or hospital admission.
Supporting someone with a lifelong condition can bring rewards, but it can also create challenges.
Carers frequently report:
- Feeling overwhelmed by responsibility.
- Worrying about whether they will recognise a medical emergency.
- Anxiety about administering an emergency hydrocortisone injection.
- Lack of sleep and exhaustion.
- Feeling isolated or unsupported.
- Difficulties balancing caring with work, family life and other responsibilities.
Our Emotional Wellbeing resources are as relevant to you as they are to the person you are supporting:
Being informed and prepared
The charity 'Forward Carers' found that only around 30% of carers feel adequately trained to manage a medical crisis, while many report needing better access to information, guidance and peer support.
Below we address a few common concerns from partners, family members, friends and carers: