If someone you love is diagnosed with vasculitis you may feel helpless and wonder how you can be supportive. Research has shown us that family and friends can play a vital role in helping individuals deal with a chronic illness. When a person is suffering from a chronic illness, it is important that they feel supported.

Tips to help guide you in supporting someone with vasculitis

1. DON’T assume you know how they feel or offer advice unless they ask for it. It is a good idea to listen and validate the person’s feeling without the need to tell them how they should feel. Try not to offer advice unless they ask for it, as most time people just want to vent and be heard.
2. Ask directly what you can do for them, instead of automatically assuming you know how to help. Any sort of help offered is always appreciated. But because there are so many different types of vasculitis, everyone has a unique experience. A good approach is to ask your loved one what they need. Chances are, what they need is different from what you assume they need.
3. Do not use statement like ‘it could be worse’ or ‘be strong’. Statements like these are typically made with good intentions, but they can really minimize and suppress a person’s feeling and just make your loved one feel more alone.
4. Educate yourself about the disease
5. Offer practical help, like a ride to their appointment or help with chores at home
6. Help your love one to develop a list of questions they can ask their doctors.
7. Do not tell them things like, you ‘don’t look sick’. It is not a good idea to make judgment about how someone is feeling base on how they look. When this is done, you minimize their suffering. Also, keep in mind that people often have invisible symptoms, they may be actively engaged on many projects, but that does not mean that they are not experiencing symptoms. People also have differences in pain tolerance.
8. Accommodate their limitation, do not complain about what they can no longer do.
9. Avoid injecting your own experience into conversations. Do not presume you understand something you really don’t, even if it is a genuine attempt to make your love one feel less isolated.
10. Be flexible when making plans. The symptoms experienced by your love one may wax and wane, and your love one may have good days and difficult days; the more flexible you are, the better support you will be to your love one.

Tips for talking with teenagers

• Choose a quiet spot to talk; and allow enough time for your teen to understand the information and ask questions.
• Consider sharing information in multiple conversations. It may take them time to process all of the feelings that arise.
• Prepare them for what will change.
• Ask them if they understand the information you have shared and if they have questions.
• Take time to understand their questions and provide gentle and honest answers.
• Help them balance responsibility to avoid increased stress.
• Ask specific questions about their feelings, and thinking, such as: What is it like for you when I’m gone not around? What is hard for you?
• Avoid general questions, such as, How are you?
• Watch for changes in your teen’s behaviour, they could need additional support to help them cope. This can include:

1. Changes in academic performance or a loss of interest in school
2. Withdrawal from friends or family
3. Mood changes, such as extreme anxiety or constant sadness

If your teen does not communicate much with you, encourage them to seek support from friends or other adults. This may also include grandparent and other extended family members.

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