Explaining systemic vasculitis to other people

This page is about:
  • Choosing when and why to be open about having systemic vasculitis
  • Ways of explaining systemic vasculitis to other people
  • Feelings about other people’s reactions to systemic vasculitis
  • The ongoing struggle to explain that systemic vasculitis is lifelong

Choosing when and why to be open about having systemic vasculitis

People had a range of reasons for being open about having vasculitis. When Steve was first diagnosed, he asked a colleague to email everyone at work so they would understand. Angharad chooses to be open as “I don’t want to come across as lazy.” She handed over information from her doctor to her “really supportive colleagues.” Mo had never heard of vasculitis, and it took a long time to get the diagnosis. She now wants to “enlighten” people as it can affect anyone at any time.

As “chronic illness is all around us,” Steve believes everyone benefits if he is open about vasculitis.

Sometimes the effects of vasculitis are visible. In the early days, Nicola and Dawn’s appearance changed so much that it was obvious something was wrong. Nicola felt she had to explain because, due to steroid side effects, people didn’t recognise her.

Nicola’s changed appearance meant “every time I leave the house, I have to tell you about my illness.” It felt “like I wasn’t Nicola anymore.”

On the other hand, when Dawn’s nose collapsed, she tried to “hide my illness” by telling her children she had banged her head on a table.
However, often people said they feel that vasculitis is invisible to others. Like many of those we spoke to, Wendy looks well. When people comment on this, she sometimes tells them how she is really feeling and at other times “just can’t be bothered.”
Karen, Lynn and Sharon talked about giving different information to different people such as colleagues, family and friends. Rather than mentioning vasculitis, Karen often gives excuses (“little white lies”) when she is too tired to do something. Lynn limits what she tells friends and wonders if this is because both she and they “want their perception of me as to be Lynn the coper, Lynn that just gets on with it, regardless.” Nicola and Sharon also disliked the idea of people pitying them.

Sharon dyed her hair pink to “give them something different to talk about” than the effects of her vasculitis. If asked, she just says “I’m fine.”

Ways of explaining systemic vasculitis to other people

People had similar ways of explaining vasculitis to others. Jane tells them that vasculitis is an autoimmune disease, and “they don’t really know what triggers it.” Mo has “a little recording” in her head of the key points. Holly and Wendy found people understood the severity of vasculitis when they mentioned getting chemotherapy.
It was more difficult sometimes to explain to others the detail of how vasculitis affected them personally. Nicky would mention mouth ulcers but “you don’t want to sort of talk about genital ulcers with your friends and family particularly [laughs].”

For Melissa, finding the “right time” to tell a potential partner about the seriousness of her vasculitis is “an art that I haven’t quite got the hang of yet.”

People mentioned different ways they had tried to get people to understand the impact of vasculitis. Jane X gave family members an article a patient had written about fatigue because it was “easier than explaining it myself.” Isabella finds people seem to understand a comparison with rheumatoid arthritis.

In the past Gail had a broken leg. She now tells people that having nerve damage from vasculitis is like walking with your legs in two thick, hard casts.

Feelings about other people’s reactions to systemic vasculitis

When Dawn told friends about her vasculitis, they “didn’t say anything. As people do. Because they don’t know what to say.” Charlie noted that, while people would ask how he was, they were “not necessarily ready to hear about a lot of the challenges.” As a result, “as well as the loss of independence, I feel like there’s a lot of isolation there.”

Brenda feels that, unless people have vasculitis or a long-term illness like it, their sympathy only lasts “for a little while” then they “don’t want to know any more.”

It was common for people to tell us they were frustrated about being expected to justify the consequences of vasculitis. Steve, for example, mentioned getting lots of sympathy and understanding, but also feeling “bullied” when people don’t accept his dietary restrictions and physical limitations.

When her vasculitis rash appears, Katy hates that people ask what she has or hasn’t done differently.

Dean’s body “won’t allow” him to do as much as fit people. At snooker or the gym, he is often asked why he needs a rest.

People told us they would like others just to acknowledge how they feel. Richard gets frustrated when people tell him the things that he could do in spite of the limitations vasculitis has put on his life: “Yeah you’re right, I could do needlework, but I don’t want to.” Nicola found it “infuriating” when she tried to discuss how she felt about her changed appearance, and some people either avoided answering or gave examples of how things could have been worse.

The ongoing struggle to explain that systemic vasculitis is lifelong

People often said it was difficult to explain that vasculitis is a lifelong condition, even to family.

Claudia has to remind family and friends that she will always have vasculitis.

Salma couldn’t find the Gujarati words to explain to her husband what vasculitis meant for the future.

Like Claudia and Salma, Diane found some family members understood how seriously ill she was at first but then thought they would be fine. Graham has lost the sight in one eye. He thinks some family members don’t realise how life changing vasculitis is, as they say, “You’ve got your remaining vision, what are you worried about?” Marie’s mum can’t understand why she is sometimes okay and sometimes can’t get out of bed. And Wendy went through a “painful period” of reminding a relative with Alzheimer’s disease “over and over again” why she was going to hospital.

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