Living with the emotional impact of systemic vasculitis

This page is about:
  • Wondering what systemic vasculitis will do next
  • Feelings around having systemic vasculitis
  • Emotional consequences of the time when people became ill with systemic vasculitis
  • Finding ways to live with the emotional impact of systemic vasculitis

Wondering what systemic vasculitis will do next

We heard again and again that it is exhausting and emotionally draining to live with the uncertainty and anxiety of what vasculitis will do next. Steve feels this “sheer anxiety” as a stabbing pain in his solar plexus. Pete focuses on getting on with life but “the vasculitis is always there, you’re always aware of it.” As Mo said, “you want it to go away but it’s never going to go away.” Dean wonders if he will ever “get my head round” it.

Lynn tries to keep thoughts about what vasculitis will do next at the back of her head – but new symptoms make her wonder if it is “running amok.”

The uncertainty of vasculitis for Angharad means “I don’t know if I will live, I don’t know if I will die.” She’d like people to “accept that we’re struggling.”

Although they acknowledged the uncertainty of vasculitis, not everyone we spoke to felt this made them anxious. Jeremy, for example, said he’s “not a worrier” about things he can’t control.

Jeremy thinks he would get warning signs if his heart condition came back. With vasculitis he might not.

Feelings around having systemic vasculitis

When people discussed how they felt about getting vasculitis, there was often a sense of loss, anger and unfairness. As Holly was only 19, “you’ve sort of had your life halted in a way before it’s even truly begun.” Charlie similarly felt the loss of independence at a young age.

The effects of vasculitis and its treatment has, at times, had a profound impact on Charlie’s identity.

Marie talked about the “abrupt halt” vasculitis brought to her active and sociable life, which included performing in bands. Wendy’s mental health suffered as a reaction to “losing my life, really, and how it had been and having to relinquish this idea of a future” where she could do the things she wanted. Steve felt he had “become a more serious person” and several people talked of having changed their outlook on life and what matters.

Vasculitis “knocked” Nicola’s identity, as it meant she was no longer “a healthy person.”

Lynn had tried to lead a healthy lifestyle, so vasculitis felt unfair. Although “like a three-year-old, you want to lie on the floor and scream and kick” about it, she had moved on to the “silver lining” that there was still a benefit; as Dean said, “whether I’d have smoked 20 fags a day I still may have got this illness, but it could’ve been far worse than what I’ve got.” Jane X at first felt it was unfair to have two rare autoimmune diseases but “you get through that phase of feeling cross, feeling unhappy about it.”
Jane was unusual among the people we spoke to in saying that vasculitis has changed her life for the better. Kidney problems as a result of undiagnosed vasculitis caused a cardiac arrest, which left Jane with a brain injury. She says this has “actually changed my personality a lot.” She was previously “very shy. I found it very difficult to talk to new people” but now laughs, chats and is “more fun to be with.” Jane also had “a bit of a religious experience” when she collapsed. She became tearful when talking about her gratitude for the bystander who saved her life.

Since having a cardiac arrest due to vasculitis, Jane feels she has “a guardian angel over me.”

Jane was not the only person to mention emotional reactions of a more spiritual nature. Nicola became emotional when telling us that people she knew had offered to donate a kidney if she needed a transplant. This offer “to give a part of them. To make me well or better, it’s like, goodness, I don’t know if I can articulate how that feels.”
Other people told us that vasculitis has had less of an emotional impact. Jeremy and Isabel feel their condition is well controlled and are confident in their care, and Katy has “learnt to live with it.”

When Katy’s vasculitis rash appears, “I probably get angry for five minutes and then I’m over it.”

Emotional consequences of the time when people became ill with systemic vasculitis

Among people who had difficulty getting a vasculitis diagnosis, it was common for this to have long-term emotional consequences. Roberta, Lynn and Brenda told us they still struggle to accept there were times when people didn’t believe their symptoms.

Roberta is still upset about the time before her vasculitis diagnosis, when “nobody believed me.” One night she was in so much pain she took a taxi to the hospital, but they “sent me home.”

Marie was not the only person who told us they had had “suicidal thoughts.” Dawn finds it hard to trust doctors, and Melissa has a “fear of going back to that place of not being listened to.” Gail said that, while she had never thought “Why me?” over vasculitis, she has had “a lot of reflection on how, if this had been picked up much sooner, how my life would’ve been so much different.”
Many of the people we spoke to had been very seriously ill with vasculitis and the emotional impact of that time was obvious. Sharon’s vasculitis left her needing a kidney transplant and “as you can tell, it’s still very, very raw, even though it was a long time ago.” Dean and Diane’s emergency hospital admissions have left them afraid of being alone in case vasculitis attacks the same way again.

Diane’s collapse from vasculitis left her fearful of being alone. Now she has dogs Trixie and Ruby.

People who had been in intensive care did not always remember what had happened to them, and this could be unsettling.

Peter remembers nothing of his time in hospital after collapsing from vasculitis. This “hurt me more than anything else.”

Claudia doesn’t remember what happened when she was very ill with vasculitis. She now thinks it might be better this way.

Jane told us it was helpful that her team kept a diary for her while she was in intensive care. Every day they wrote down what had happened and how talkative or tired she had been.

Finding ways to live with the emotional impact of systemic vasculitis

People talked about feelings of frustration, anger, loneliness, isolation and exhaustion that come with vasculitis. They also routinely added how they deal with this.

Isabella is determined to have as good a life as possible with vasculitis (“Churg Strauss”).

With vasculitis always on his mind, Steve loves time with people “not talking about the bloody disease.”

Karen acknowledged “some dark times” with vasculitis, but feels she wants to “get on with it, face up to the challenge and enjoy life.” Holly now gets enjoyment out of “simple things” she didn’t value before, such as seeing squirrels running in the trees.

Although thinking positively helps Mo “get through” life with vasculitis, she doesn’t always find it easy to put into practice.

Mo and many others told us about a variety of things that help them live with the emotional impact of vasculitis:
  • Doing things that they enjoy (e.g. reading, photography, music, video games)
  • Keeping things as “normal” as possible or finding a new normality
  • Getting fresh air
  • Noticing small improvements
  • Having visual reminders of things that make them happy
  • Getting counselling, psychological, or psychiatric support if necessary, including antidepressants
  • Finding ways to relax and take gentle exercise

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