Chronic and Unpredictable: The Anxiety of Living With CSU

Kristen Willard, patient advocate with chronic spontaneous urticaria

The uncertainty around how long painful symptoms of chronic spontaneous urticaria will last can create crippling anxiety, said Kristen Willard, a patient advocate and educational consultant. She has also lived with chronic spontaneous urticaria for approximately 3 decades.

She spoke to The American Journal of Managed Care^® (AJMC^®) about the most challenging parts of living with CSU, the psychosocial effects, and the need for new therapies.

In the first part of her interview, she explained her personal journey to get treatment, her experiences with antihistamines and steroids before being treated with a biologic, and more.

AJMC: Overall, what have been some of the most challenging parts of living with CSU?

Willard: For me, the most challenging part of living with my CSU has not been the unpredictability, which is something I hear from other patients quite often. For me, it's not the unpredictability, it is instead the day-to-day living when I have active hives. I think it's really difficult to sufficiently explain to someone who does not experience them just how life altering the hives are. It isn't just an everyday irritating itch, but it really feels as if there is no escape. I sometimes get angioedema with my hives as well, and that would make it difficult to use my hands or sometimes difficult to walk. I know of patients who cannot walk at all when they have that type of swelling.

For me, again, it's not so much the burden of medications or access to care, which I feel lucky to have ready access to and insurance or the unpredictability. But for me, it really is the day to day of living with the symptoms that I find to be debilitating.

AJMC: Can you describe the clinical and economic burden of having CSU on you and your family?

Willard: The economic and clinical burden on me and my family, I think is an important thing to address. I am in a situation where I am currently single. I think that is a situation that many people with chronic urticaria find themselves in at one time or another. I think it's also uniquely challenging. As in general, I'm the person who's responsible for every trip to the store to get a medication or every doctor's visit or every dog walk. I think all CSU is challenging. There's no doubt about that. My mind is just difficult in its own way.

I think it's also important to stress the uniqueness of our experiences. My experience being in a city, I have access to things where I live in Washington, DC, that many people who were single and living in more remote areas would not have access to, because I can get down the street, 2 blocks to a pharmacy. I think it's important that we're sharing all of these different stories. Those individuals who are working with or treating or caring for as a family member or a friend, who are providing assistance to people with chronic spontaneous urticaria can know better how to support that person, such as offering to pick up medications. Or when you're a physician thinking through if they're going to be able to get the medication that you're prescribing them, if you're doing it over the phone. Thinking through those kinds of things that are related to our health outcomes each and every day really makes a difference for people like me.

AJMC: What are the psychosocial effects of living with CSU and how do they impact you on a day-to-day basis?

Willard: I think the psychosocial impacts of living with CSU are considerable. As I said earlier, it really does impact every facet of your life. I cannot think of an area of my life that it does not impact when I have hives. It creates a situation in which you cannot see an end to it. When you have a headache, a mild headache, you know it will resolve. When you have a cold, you know it will resolve. With CSU, there is an uncertainty of the long term—not necessarily unpredictability, but an uncertainty of the long term. Will this resolve? Will I be like this for the next year? Will I be able to do the things that I love to do every day or will I be able to carry on the way that I have? That is extremely difficult. It sort of upends your entire existence.

I feel better equipped now, but not knowing how to deal with that anxiety, certainly depression, it is not a surprise to me that people with CSU have these mental health comorbidities so often because of how difficult that is for us. But I didn't have names for all of those things that I was experiencing early on or know who to go to necessarily. I think assuming that you should be talking to a patient about mental health comorbidities and assuming that they could be significant for that person or at least have the conversation to find out if they are, would be very helpful for someone like me who definitely experiences psychosocial effects along with my CSU.

AJMC: How does the chronic and unpredictable nature of this disease impact your livelihood?

Willard: CSU as we know it is chronic and unpredictable. It impacts every aspect of my life, including my livelihood. When I'm between flares, I truly try to exist as if I do not have CSU. To act otherwise, for me, would add a considerable amount of anxiety to my life. When I do have a flare, as I said, the unpredictability of the condition is crippling for me, and that most definitely impacts my livelihood and my ability to do my work specifically.

I remember in the old days when we were using the sedating medications—and many people are still using sedating antihistamines—that made it so that I would have to sleep in the middle of the day, which is very difficult. Many people are still going to the office. They can't keep their heads up when they're at work. Now, even when I have a flare, being able to focus, being able to sit down even is difficult. Having your hands so swollen that you can't type on the computer, it makes it so I can't fully fulfill my responsibilities and the things that I want to do when I'm a good participant in my job and I'm of value to my employer. I think it most definitely has a significant impact on my livelihood. And I'm very thankful that, for now, I have my flares under control.

AJMC: Based on your experience with previous medications, why do you think there is a need to develop new therapies for CSU?

Willard: I most definitely think that there's a need to develop new therapies for CSU, even though we've come so far. I look back 30 years and my access to medications is dramatically different than when I first started. I even want to just focus on those sedating versus nonsedating antihistamines: that's a real game changer for someone who doesn't want to spend the whole day in bed, when they take something at 8:00 AM and they're not able to move because they need to go to sleep or they can't drive, that type of thing. But every day, someplace, whether it's talking to someone in person, whether it's seeing it on social media, I come across other people with CSU whose disease is not controlled. That means that despite how far we have come, we must continue to do the work to find new therapies and to listen to patients to find out what it is that they need in new therapies, so that when we find new therapies, patients will actually use them. They'll adhere to them. I think until we have chronic spontaneous urticaria under control completely, we will always need new therapies.

The other thing I will say is that coupled with the need for therapies is the need for education. We must get the word out to our primary care providers, to specialists, to physicians and allied health care professionals in training about what CSU is, that it isn't just your everyday itch, and what the recommended treatments are. If they don't know them, they're pretty easy to access and implement once you have it under your belt. Then, it's also educating patients and families that these options exist and also that there is hope for your urticaria. There are places you can get support, there's hope for your urticaria, and we'll all keep moving forward together.