The Social Cost of Vasculitis

The Social Cost of Vasculitis

Over the past 10 years I have watched my mother struggle with an autoimmune disease. She has gone from a vibrant, energetic woman who rearranged the living room furniture every two months to someone who relies on my father to bathe and dress her. She has had a hard time accepting her multiple sclerosis (MS), but support from friends has helped her adjust to her “new normal.” For example, on a particularly bad day, she may call a friend from the local MS support group to discuss some new symptoms and her fear that a relapse is around the corner. On other days, she may call her best friend from high school to complain about how her family just doesn’t understand how exhausted she is.

Although my Mom is right and I don’t understand everything she is going through, I am glad that she has supportive friends that understand and empathize with her situation. Seeing how a long chat with a friend brightens her day has directly influenced my own research. The scientific world has published very little about how chronic disease affects friendships. We know that vasculitis negatively impacts people’s physical functioning, but we don’t really understand how people are affected emotionally and socially. Thus, one of the goals of my doctoral dissertation was to better understand how vasculitis affects people’s relationships with their friends.

This article presents some of the results from my dissertation survey. On the survey, I asked participants, “How, if at all, has your relationship with your friends changed since you were diagnosed with vasculitis?” Of the 232 people who took the survey, 221 answered that question. Below I present some of the themes that emerged from participants’ responses to that question, using people’s own words to illustrate each theme.

Sixty percent of the people who took the survey had Granulomatosis with Polyangiitis (GPA; formerly known as Wegener’s Granulomatosis). Most respondents were female (70%) and White (91%). On average, participants were 51 years old and had been living with vasculitis for 6.5 years.

Positive Changes

Almost half of participants described some positive changes to their friendships. These positive changes included receiving social support, feeling closer to friends, and gaining new friends. The types of support friends provided ranged from “checking in” to bringing patients to their medical appointments. Many people described how friends were sources of emotional support, companionship, and also offered to help with chores and other tasks, such as cooking meals. One person wrote that, “My friends are more helpful and caring towards me. They arrange meals out and invite me to get me out of the house.  They’re always calling me on the telephone and giving me words of encouragement.”

People particularly appreciated those friends who showed some interest in vasculitis and accepted that they would not be able to participate in social activities in the same way as they did before they were diagnosed. For example, one person noted, “People have started to care about me in a different way and not in a bad way. Giving up things, like drinking alcohol, they know and help in making it easy for me to have fun and fit in.”

Several people also noted that they made new friends after their diagnosis. New friends often had vasculitis and understood what the person was going through. To illustrate, one person wrote, “I am closer now to friends who have chronic illnesses.  We can talk about things that healthy people just do not understand.  It’s kind of like a club that no one wants to be a part of – but we’re really glad that we can support each other, particularly when going through a flare and facing additional loss of function.” Another person stated, “My closest friends also have WG.  My dearest friend in the world was an email buddy when I was on my first WG on-line support group in 2000.  We have since met a couple of times in person which has made the bond stronger.  We email each other every day about 5 times! Non-WG friends are constantly asking how I feel, am I overdoing it, etc., until I tell them to knock it off!  (I feel like I’m a rat on display in a research center sometimes)”

Negative Changes

Unfortunately, over half of participants reported that vasculitis negatively impacted their friendships. Almost 1 in 5 people reporting that they lost a friend and some people said they no longer had any friends. For example, one person wrote “my friends are now my cat and characters from TV.” Another stated, “I lost a very close friend after my illness, she only visited me 2 times in the hospital when I nearly died.  After when I came home she stopped calling and when I called her she just wasn’t the same. I haven’t talked with her now for over 2 years.  It hurt, we were always out and doing things together weekly.”

Additionally, 1 in 4 participants reported that their vasculitis caused them to participate in fewer social activities with friends. One person stated, “In general I do a lot less with others because I am not feeling well (ie don’t have the energy) or I don’t want to talk about my disease/vasculitis.

I think in general the family is less social because we have to juggle time around the need I have to get rest in the afternoon (lie down). ”

People also described how their friends did not understand vasculitis or seem to take an interest in it. This lack of understanding could lead to frustration and disappointment, as illustrated in this quotation, “Friends don’t really understand Vasculitis. They seem to think I have a cold or something simple. They care and are always asking about how I feel and when I expect to be normal again. They mean well, but asking everyday how I am is a little frustrating.”

Aspects of vasculitis and its treatment also can also negatively impact people’s ability to meet with their friends. In particular, vasculitis-related fatigue and lifestyle changes, such as avoiding infections and alcohol, led to changes in people’s friendships. Regarding fatigue, one person wrote, “I just want to be left alone… And I’m too worn out to go anywhere with anyone. It sucks.” Another stated, “I am not as sociable. I don’t have as much energy, I am aware that if I go out tonight I’m likely to be tired and unproductive tomorrow, so I choose what I do with friends… So I feel as though I have become quite boring.”

Friendships that were primarily defined by engaging in shared physical activities seemed to suffer the most. For example, one person explained, “We used to do a lot of walking, even mountains, and organised an annual weekend for friends to gather for it. Since diagnosis my disability means I can’t walk as I used to so we don’t see these friends as we used to and our social life with them is not the same.” Another wrote, “I have been very impaired in my ability to participate in activities that I enjoy with my friends that I used to be able to do – go on hikes, go on trips, go to evening events at some distance away (45 minutes to an hour), etc. This has been very difficult.”

Take Home Message

Vasculitis can cause both positive and negative changes to friendships. If your relationships with your friends have been negatively affected by vasculitis, you are not alone. Many people who participated in the survey noted how vasculitis helped them discover who their “true friends” were; they were those friends who stuck by them.  Some friends may “disappear” simply because they do not know what to do or say when they see you dealing with a serious illness. In those cases, friends may benefit from learning a little about vasculitis, so they know how the person living with vasculitis will be affected and what they can do to help.

In order to help your friends learn some vasculitis basics, I have developed two podcasts that you can share with them. The first podcast describes what vasculitis is and how it affects people physically and emotionally. The second podcast describes ways that you and your friend can help maintain a healthy friendship. The second podcast has suggestions for activities that you can do together. If you would like your friends to learn a little about vasculitis, please share these podcasts with them. You can access the podcasts here.

If you’re feeling isolated and don’t have anyone to talk to, reach out to the vasculitis support groups listed in the back of this newsletter. Remember that you are not alone and that many other people are dealing with the same issues. Online support groups are a great way to meet other people who truly understand what you are going through.

If you have problems accessing the podcasts or have suggestions for additional podcasts, please feel free to email me.  You can also follow me on Twitter at @LeshaCarpenter. If you’re interested in reading more about quality of life issues for people with vasculitis, you can read a book chapter I wrote on the topic. The chapter is freely available here.

Source:  Delesha Carpenter, PhD., MSPH
April 2013

Editor’s note: Delesha Carpenter, PhD, MSPH, is a research assistant professor in the Division of Pharmaceutical Outcomes and Policy. Her educational training includes predoctoral and postdoctoral National Institute of Health fellowships at the UNC Kidney Center and the UNC Thurston Arthritis Research Center, respectively. She received a PhD in Health Behavior and Health Education from the UNC Gillings School of Global Public Health and an MSPH from the Department of Health Promotion, Education, and Behavior at the University of South Carolina’s School of Public Health. She completed her undergraduate degree in Cardiopulmonary Sciences at the University of Central Florida.