Building a Supportive Care Team for Chronic Urticaria: Rachell’s Story

As a Hispanic woman living with chronic spontaneous urticaria (CSU), Rachell has faced years of unpredictable symptoms, stigma, and a medical system that didn’t always listen. Raised in a culture where home remedies come first and mental illness is not openly discussed, Rachell tried everything to manage her hives on her own before finally seeking help. 

Even though she was sometimes dismissed or blamed for her symptoms, Rachell didn’t give up. Over time, she built a strong care team that respects her experience, honors her voice, and helps her manage CSU as well as systemic mastocytosis.

Rachell now shares her story to help others feel seen, offering guidance on how to prepare for appointments, advocate for yourself, and push past cultural and medical barriers. She believes every patient deserves care they can trust.

What was your experience getting diagnosed with chronic spontaneous urticaria?

The very first thing that I was diagnosed with, before being diagnosed with systemic mastocytosis, was CSU. So for the longest time, I thought I only had CSU, and that’s how we treated my symptoms.

I was told, ‘You have chronic urticaria, there’s not much we can do for it. We can give you antihistamines and steroid injections. That’s about it.’

It wasn’t easy to get the CSU diagnosis. It always came back on me. The doctor would say, ‘You’re coming in contact with something, you’re eating something, or you’re doing something. Keep a journal and you’ll find the pattern.’ So I did, and there was no pattern. It felt like there was something wrong with me. Nobody’s listening to me, nobody cares … and you’re pushing it back on me? I’m not the doctor. I shouldn’t have to find this trigger.

But maybe at the start, it was an unrealistic expectation that the doctor was going to know. I mean, when you go to an immunologist’s office, I expect the doctor to know what’s wrong. You hope the doctor can tell me what I can’t eat and what I can’t be around. But, at some point, you as a patient have to understand this: there’s no cure.

All we can do is management. And I think that that’s a hard thing to accept. Because again, just innately, we have this expectation of the medical community that the doctor is supposed to fix everything, and sometimes there are things that can’t be fixed.

What role did culture and traditional beliefs play in how you first managed your hives?

First, for Hispanic culture, I don’t know where the distrust of doctors comes from. I don’t know if it’s a matter of being afraid now that if you go in, with Immigration and Customs Enforcement (ICE) now, that whole situation [involving possible deportations] is added to it.

Secondly, within the culture, there is a ‘We’ll take care of it on our own’ attitude. Like with home remedies, it’s ‘We’ll fix it, so you don’t really need a doctor.’ You only go to the doctor when you’re really, really sick. That was even me when I was growing up. My mom, we did home remedies a lot, and the only time that I went to a doctor was when I had a fever or something serious. There is the joke that Vicks® is the cure-all. Well, that was my mom’s go-to for everything. If it isn’t a broken bone, then use Vicks®.

I think that there are more people who probably have urticaria who are suffering alone because they don’t go to the doctor. Plus, there are stereotypes in the medical community about certain cultures. When you go into the doctor’s office, you’re already typecast, and you think you’re not going to be believed.

The third thing with CSU is that most of the time, doctors can’t fix it, so why bother going in? I think for some patients there’s that unrealistic expectation that the doctor can fix anything. And that’s not always the case. So when you go in, you have chronic urticaria and you think that this pill or this cream is going to fix it, and it doesn’t, that just adds to the mistrust.

How long did you wait before seeking treatment, and what made you finally go?

I ignored it for 4 months, thinking it would go away. And it didn’t go away. It wasn’t until I woke up, I was covered with hives from head to toe. I looked like somebody had scalded me with water. I was hurting and uncomfortable and it felt like my skin was on fire.

Finally, I said, ‘Okay, there’s something wrong. It’s been 4 months and it’s not going away. I need to go see somebody.’ The first encounter with a doctor was, ‘Well, you’re allergic to something.’

So in the very beginning, I tried to fix it myself. First I tried what the doctor wanted with a corticosteroid shot or antihistamine creams. It didn’t work. Then I thought, since the doctor is telling me it’s allergies, ‘I’m going to get this immune stuff from the natural health store and fix it all.’ I kept thinking I could fix this myself. I’m going to eliminate this or that from my life.

But it did not fix it. For months, I tried that before I finally caved.

You now have a great care team. What helped you find the right doctors?

Remember, healthcare is providing a service to our health. You have to look at it that way. I went through many doctor appointments to find the care team that I have.

When searching for a doctor, the first thing I did was look on their website for specific terms like “patient-centred care” and similar phrases. I read reviews about the doctor. If the review said, ‘I felt hurried or rushed,’ that wasn’t an option. I looked for things like ‘I felt listened to” or ‘supported.’

The very first appointment, I see it as an interview with the doctor. You’re going to provide a service to me. I lay it out: I’m looking for somebody who is going to be part of my team. I want a doctor who is okay with saying, ‘I don’t have all the answers.’ I want somebody who will listen, not judge, and understand that sometimes I know my body better than what your medical degree says.

For me, I’ve said it’s okay to fire doctors. I’ve been fired as a patient. I’ve had doctors tell me I can’t take you on because your condition is too complex. There’s that hierarchy that we think we can’t fire them. But if you are not going to provide me the care I’m seeking, then you’re not the right fit for me.

How do you prepare for medical appointments now?

I go into an appointment with a goal because you may only have a 15-minute window. I pre-plan what I want out of my appointment. Do I have issues with side effects? Is the medicine not truly working? Am I taking it as I’m supposed to? Do I want to talk about blood work? There are times when the doctor will say, ‘No, we need to talk about your blood work.’ So what you have to ask needs to be discussed later.

But there have been many decisions made within that 15-minute window because we were very focused on what we wanted to get done within that 15 minutes.

Also, I think about how to communicate clearly, but not seem cocky. Your Dr. Google does not compare to the doctor’s MD. You can be empowered in your healthcare but also respectful to the doctor’s position.

Your journey has caused a lot of mental burden. How has stigma around mental health and chronic illness in your community affected you?

There’s very much a ‘Suck it up, buttercup’ thing within the Hispanic community with mental health. It is seen as a weakness if you seek mental health treatment. There is a stigma associated with that initially. I felt like it weakened me.

Also, there’s a belief that if you get anxiety put in your medical record, then everything becomes, ‘You’re just having a panic attack. You’re just anxious.’ Symptoms become dismissed because you may have anxiety or depression on the medical record. ‘You’re just depressed. You’re overreacting.’ That type of thing.

I didn’t want any type of mental health issue on my record. I don’t want to be treated differently because I may be depressed. Fortunately, my doctor reminds me that nobody’s ever going to think less of me because I have to take depression medication for a little while.

What do you wish others better understood about living with chronic hives?

Chronic hives are uncomfortable. They can make you grumpy. There are days when you’re very quiet because it’s too much. It doesn’t mean that you’re rude or anything along those lines.

Imagine having a mosquito bite all over your body, and it itches, but nothing makes it go away. Wouldn’t you be a little grumpy some days? After a while, it affects your mood. It affects everything about you. It really does.

But I’ve learned how to advocate for myself, how to prepare for appointments, and how to build a care team that supports me. That didn’t happen overnight, it took time and effort. But now I have a doctor who listens, who meets me where I am. I believe that should be the norm, not the exception. We all deserve care we can trust.