How To Help Loved Ones With A Rare Condition
If a loved one is dealing with a rare chronic disease or condition, they often just need a friend to be there to support them. Here are a few ways that you can provide them with just that.
Be willing to listen: Show them you are comfortable talking about their rare disease. A crucial part of feeling supported is having your thoughts and feelings heard. Don’t be afraid that you will not have the answers as listening alone can be wholly supportive. By giving your time you show a willingness to learn which can be hugely comforting.
Help to empower them: To empower someone, you need to first listen to what their aspirations are, what they find difficult, what they would feel good about achieving and how they would like to be supported in their achievements. It is important to let them take the lead, but make sure they know you are happy to support them in the way they think would be most helpful.
Spend time with them without feeling offended or upset at last minute changes to plans: Most rare chronic conditions have an impact on daily life in some way. This means that plans are often difficult to arrange in advance. This isn’t laziness nor is it an unwillingness to socialize. It’s frustratingly the only way to deal with chronic symptoms. This combined with last minute appointments, hospital admissions and treatments can feel like a full-time job!
One thing that is crucial is for your friend to know they can cancel plans without having to explain themselves or feel guilty for doing so. It is important to continue to create the plans with your friend/family member as this is a huge support to combat the social exclusion, loneliness and guilt a chronic condition can create.
Help them create and complete a bucket list: A bucket list can be a great way to bring all these points together in a practical method to support someone you care about. A bucket list can help bring a positive focus, complete dreams and wishes, build confidence, self-esteem and show that you are willing to support a friend despite their difficulties.
Committing a small amount of time can mean the world and treating a friend as you would everyone else is hugely uplifting. By acting as you would with anyone else whilst keeping in mind the difficulties they face, you will be a huge help and could be the key to supporting a friend’s emotional wellbeing.