Support groups and meeting others with systemic vasculitis

This page covers:
  • How to meet other people with systemic vasculitis
  • What people get out of systemic vasculitis support groups
  • Making choices about support groups

How to meet other people with systemic vasculitis

People told us they were unlikely to meet anyone else with vasculitis by chance because it is a rare disease. Sometimes hospitals or clinics brought people with vasculitis into contact. Steve laughed when telling us that he tends to be “the one person in the waiting room at the clinic who talks to other people,” but through this he has made “a very valuable friend.”

Grant gets his treatment alongside older people with vasculitis. For him, listening to their stories is a mixture of positives and negatives.

Occasionally people were put in touch with individuals through a family, friend or support group. When she was first unwell, Nicola didn’t want to be introduced to the other person, but they have since enjoyed meeting up. Isabella has made a “wonderful” connection, and they “compare notes all the time.”

Meeting people who were doing well with vasculitis gave Brenda “hope” – but she doesn’t want to listen to them talking about their illness at support groups.

People who were diagnosed many years ago said there are now more opportunities to meet other people with vasculitis and to get support from groups.

Mo was “very, very lonely” with vasculitis. She started a local support group to meet and help others.

What people get out of systemic vasculitis support groups

People who liked support groups – whether online or in person – told us they helped in many ways.

Holly thinks online communities help people with vasculitis “be a better patient to your doctors.”

We heard that support groups could offer hope and new friends.

After reading “horror stories” about vasculitis on the internet, Isabella found a support group “heartening and uplifting.”

Pete’s wife persuaded him to go to a support group and “all of a sudden here I was with these other people sitting having a cup of coffee and all of them having different strains of vasculitis.” He has “made some really good friendships” and now helps out at events. Karen finds online contact means “even if you don’t know somebody, you know the struggles they’ve had, and even if it’s just sending a message about their kid’s birthday or something like that, that’s quite good.”

Support groups could also provide people with time and understanding.

Although Richard is “no fan of touchy-feely stuff,” he enjoys being part of a vasculitis support group.

Jane X called a vasculitis charity helpline when she was trying to work out what might be wrong with her. She found it helpful to talk to someone other than her family or healthcare professionals because “they’ve obviously heard the stories before, they know about how it is, how it can feel. And they’ve got more time than the doctors.” Diane’s husband went with her to a support group meeting. Hearing other people talking about similar symptoms reassured them both “that it’s not anxiety, it’s real.” Sharon likes that support groups have a shared knowledge and language, where “you can type in MPA PR3 [a type of vasculitis] and the other person knows exactly what you’re talking about.”
In addition, people told us that support groups helped in practical ways. Wendy – an experienced social media user – says a particular online forum offers “proper good peer support.”

Wendy asks and answers questions in an online vasculitis group but says you can “just be a lurker.”

Claudia would like to have a baby. Hearing from other women with vasculitis who’ve had a child is helpful.

Through support groups, Graham and Holly realised how healthcare can be different between services, regions and countries in the UK. Dawn was among those encouraged to get referred to a specialist centre. Melissa can access a support coordinator for advice on accessible housing, social care or benefits applications. Diane has attended courses, run by a patient charity, about taking control of her illness; this helped her feel more confident and prepared for her return to work.
A number of people we spoke to who had been helped by support groups and charities went on to volunteer or raise funds for them. They told us they wanted to make life easier for other people with vasculitis and to “give something back.”

Making choices about support groups

Although people commonly told us they were happy to help other people if they could, not everyone we spoke to wanted to join a support group.

Nicola says she would tell other people to go to support groups but “it’s not for me.”

Jeremy had “never felt any need for any support. Again, that perhaps partly comes down to my confidence in the doctors that deal with me.” Katy hadn’t been told about any groups but added, “I feel like I don’t need support because I’ve learnt to live with it.” Grant prefers one-one conversations rather than a group, and Nicky thought she’d learn a lot but would “need to put more in to get more out.”
Sometimes people felt that aspects of support groups could be unhelpful for them.

Charlie found vasculitis support group websites helpful in some ways and unhelpful in others. He’d prefer more “relatable” and less “scary” content.

Jane X was among those who recommended being careful about what groups to join as “some alternative things are all right but, you know, the people who are effectively scam merchants saying they can cure you.” For this reason, Wendy is grateful that the forum she likes is “very carefully moderated.” A number of people said they found UK-based online groups most relevant because of differences in how healthcare is funded in other parts of the world.
Karen felt support groups on social media could “take some of the questions that are quite normal off of doctors and nurses.” However, we also heard that doctors had a range of views on the value of support groups. Pete said doctors speak at his support group meetings, and Isabel’s consultant encouraged her to join a support group, but Marie had a different experience.

Marie’s upset that a doctor called her support group “a bunch of moaners.” She says that, without them, “I don’t think I’d have been here.”

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