Change and Loss - Living with a rare condition

There can be a lot of different changes and losses to come to terms with when you are living with a rare condition. The type, and extent of these, will vary according to your condition, and how or when it impacts you personally.

Visit the Rareminds Wellbeing Hub to explore how to acknowledge and recognise change and loss as it happens, and managing its practical and emotional impact on you, and those around you.

https://www.rareminds.org/wellbeing-h...

⁠⁠⁠Rareminds⁠⁠⁠⁠ is a mental health charity providing counselling and mental wellbeing services for people impacted by rare genetic and undiagnosed conditions. We provide training and supervision for professionals and contribute to the bigger conversation about integrating mental health into rare disease care.

Follow us on ⁠⁠⁠⁠Instagram⁠⁠⁠⁠ and ⁠⁠⁠⁠Linkedin⁠⁠⁠⁠ for more suggestions to live as well as possible with your rare condition.

  / raremindsuk  

  / raremindsuk  

If you are feeling overwhelmed do talk to someone straight away.
There are a range of organisations and helplines to support you:
NHS 111 (In Wales you can ‘dial 111, press 2’ to be transferred to a dedicated member of a mental health team in your local health board area).

Emergency Services on 999 or go straight to your nearest A & E.

You can also call a crisis line:

⁠⁠⁠⁠⁠SHOUT⁠⁠⁠⁠⁠ provides free, 24/7 text support for people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with texts free from most mobile providers. Texts can be anonymous, but if the volunteer believes you are at immediate risk of harm, they may share your details with people who can provide support.
SHOUT: Text SHOUT to 85258

⁠⁠⁠⁠⁠The Samaritans⁠⁠⁠⁠⁠ provide free 24 hour confidential support to anyone in emotional distress. Whatever you’re going through, you can call any time, from any phone for free. If it’s easier to write things down, you can also email your thoughts to [email protected] but be aware it may take several days to get a response by email.
Samaritans: Phone 116 123Calm

⁠⁠⁠⁠⁠Calm⁠⁠⁠⁠⁠ Free helpline and livechat are open from 5pm to midnight every day for anyone over the age of 15.
(Campaign Against Living Miserably): Phone 0800 58 58 58 or webchat.