Life and relationships with systemic vasculitis

This page is about:
  • Feelings of missing out on life due to systemic vasculitis
  • Systemic vasculitis and friendships
  • Systemic vasculitis and family relationships
  • Sexual health and family planning with systemic vasculitis

Feelings of missing out on life due to systemic vasculitis

People told us that life moves on around them while they deal with vasculitis, its treatment and its long-term effects.

Graham “panicked” about losing his remaining eyesight from vasculitis, so told his wife they had to move into town. They then spent 7 years in a flat that “wasn’t for us.”

Salma can’t fast during Ramadan because of her medication. She gives money to charity but misses out on the “positiveness.”

Nicola talked about how illness “steals from you,” not just health, but things like “being able to do stuff with your kids.” Grant also felt he missed out on several years of his children’s lives, “because I couldn’t do much with them.” Mo’s vasculitis was so bad, “at one point I really thought I would never see my kids grow up.”
People sometimes mentioned missing out on things that others of their age, or with similar interests, could enjoy. Since her diagnosis aged 19, Holly has felt “like I’m in the body of someone that’s 60 or 70 in terms of energy and ability to do things.” Melissa would love to be a musical director for student shows as it would be “exciting” to conduct a full orchestra. She sticks to an assistant role to avoid letting other people down because, “if it got to show week and the conductor is in hospital, then the whole thing is a bit of a mess.”

Systemic vasculitis and friendships

Some people – especially those who were single – talked with affection about close friends. Gail remembers two friends crying when she was diagnosed: “I was like, ‘I’m fine, look at me, I’m fine and it’s alright,’ and then we all had a laugh about it, and it was great.” As Karen’s friends are aware vasculitis could return, “[laughs] I did have to go through a period where they would try and stop me doing things.”
Unusually, Jeremy described himself as “a loner” who has “never felt any need for any support.” From others, we heard sadness that friendships could be changed or lost through vasculitis. Steve thinks that some people are “scared of being around ill people” and he finds it disappointing when they “just walk out of your life.” He values those friends who, “when they’ve made a commitment to help you out, that’s pretty much a forever thing.”

Vasculitis means Holly has lost friendships which were “founded upon being able to do things actively.”

In talking about friendships, people seemed to like when this felt equal. Melissa made friends at university through her disability campaigning work. Jane X had to make new friends when she moved house, so goes to knitting groups and coffee mornings. Most people there are much older than her, but she finds that fits with the slower pace of life she needs with vasculitis.

Wendy has a network of friends who help her live with vasculitis. She finds “ways of giving stuff back.”

Angharad finds a shared experience of chronic illness can help friends understand each other better.

Systemic vasculitis and family relationships

When people spoke about the effect of vasculitis on family relationships, it was often in terms of who they thought should be helping who, and how this had changed. As her husband’s carer, Roberta feels “bad” she can’t do as much for him as she used to. Mo talked about her caring role in the family and how this made it difficult to accept help herself. When Lynn’s sons got into university, she cried “tears of relief” because she felt so guilty about how vasculitis had affected family life.

Isabella likes to help her grown-up daughters, but getting ill with vasculitis meant they were helping her.

At the time they were diagnosed with vasculitis, Gail and Nicola were supporting their mums who were terminally ill. Nicola and her mum got chemotherapy at the same time. As her mum was dying while she was recovering, Nicola remembers thinking, “You have to take a back seat, vasculitis [laughs].”
Where people’s parents were available to help them, their support made a big difference. On leaving hospital, Diane and Salma were relieved to move in temporarily with their mums. When Grant was ill, his dad “stepped in and almost played the father figure” with his kids. Through vasculitis, Holly’s mother and Melissa’s parents have become their carers on a longer-term basis. Holly is in her early 20s, but her mother is “looking after her child as though I’m much older than her and it’s just, yeah, it’s strange for her.”

Sharon is an only child. When she was ill with vasculitis, her parents were “devoted” to her recovery.

Marie is in her 50s and moved in with her elderly mum and brother when she lost her house and job. While she is “so glad to be living under my mum’s roof,” it isn’t always easy. She says counselling helped her understand the tensions and feel “kind of less angry.” However, life events such as moving house and family illness could affect the stability of people’s vasculitis.

Nicky’s vasculitis flared badly during a series of stressful life events.

Where people’s partners had been with them throughout, we sometimes heard how vasculitis had affected this relationship.

Grant’s wife is very understanding about his vasculitis but – as the person closest to him – also gets “the brunt of” his frustrations.

Pete depended on his wife when he was ill with vasculitis. They now enjoy being “back out the other side.”

While Mo and Isabella appreciated their husbands’ practical help, both found it easier to talk about their illness with their daughters. Brenda got sympathy “for a little while.” Claudia felt that vasculitis “does put a lot of strain. I think my husband sees me as more fragile? As he has to look out for my wellbeing more.” Jane X thinks it helps that her husband is a patient person, but “it’s been hard because not only do I not have the life I would have wanted, he doesn’t probably have the life he would have wanted.”
Sometimes people told us that facing vasculitis had strengthened their relationship. Sharon’s husband stopped working sooner than he had intended to spend time with her and “we’re [laughs] definitely a lot closer than we ever were.” Nicola feels “lucky” that, when her husband had to do everything that she usually did with the children, “he never once said anything about him.” Jane has “never been happier. Living with my partner in my flat. It’s great.”

Sexual health and family planning with systemic vasculitis

Vasculitis symptoms and treatment could interfere with intimate relationships. When Nicky’s genital ulcers were bad before her vasculitis was treated, “a bit of rumpy pumpy was the very last thing that was on your mind [laughs].” Sharon’s husband “found it even difficult to give me a cuddle” when she was very ill. As “this person who’s now got tubes and wires coming out of them,” he was concerned that, “if he touched me, I might break, or he would hurt me.”

Melissa’s vasculitis causes painful genital ulcers and infections. This is not always easy to talk about.

People who want (or had wanted) to have children told us that vasculitis medication can affect fertility and decisions about pregnancy. Salma remembers being told that cyclophosphamide (chemotherapy) can affect fertility. As she and her husband were already trying for a baby, she felt “we’ve lost that opportunity now, probably.” Claudia and her husband have asked to be referred to a clinic that helps people with vasculitis have a baby. NHS funding for storage of eggs or sperm varies, and Charlie and his wife have a young daughter and hope to have more children. He feels it is unfair that local rules mean they have to pay for storage, which he sees as part of life rather than “a luxury.”

With vasculitis, Diane doesn’t know if she’d have the energy for a baby, even if she did get pregnant.

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