What NOT to Say to Someone with Chronic Urticaria (Hives)

Recently I was thinking about what it was like for me before I had my symptoms under control. It took me years to get a diagnosis and proper treatment.

Some of the things people said during that time were so hurtful. It made me think that I must be crazy. My diagnosis was validating and such a relief.

Thinking back on those experiences it still hurts. I can still feel the pain of a coworker telling me that I sound like a hypochondriac when I told her my symptoms. I think about friends and family telling me it was as simple as changing my detergent or to just stop stressing and it will go away. But it didn’t. I experienced the shame of my doctor telling me that it was psychosomatic and prescribing me antidepressants when the only thing depressing me was my symptoms.

Surely when they said those things they didn’t know that ten years later I would remember. They didn’t know the pain they caused. I was curious to see what kinds of things other people with chronic urticaria had had people say to them that really bothered them so I asked my group members to share. A lot of the responses were similar to what I experienced.

Some people are curious, some are cruel and some just want to help. Whatever the motivation, these things can be hurtful when dealing with a chronic illness.

I asked the support group for women with chronic urticaria about the things they wish people wouldn’t say. These are some of the responses.

1) Offering solutions or trying to diagnose us

This seems innocent enough. It’s surely said coming from a place of wanting to solve the issue. The problem is that for most with chronic hives, we have already thoroughly examined everything that comes into contact with our skin and been assessed by physicians. It seems harmless to ask or suggest but it’s a reminder that the solution is not so simple.

We have been dealing with this for weeks, months, years, even decades and it’s frustrating when someone assumes that we haven’t thought of something so simple as a detergent change or using a topical cream or lotion. Chronic Urticaria is a chronic disease. It is diagnosed by a physician. We have been through all of the possibilities, seen specialists, had blood work and allergy testing.

Chronic Urticaria has no cure, only treatment. Treatment is complex and each individual will have a unique combination of medications they have to take to control the symptoms. These can be antihistamines, injections, steroids, and immune-suppressants. Our medications come with their own set of side effects we deal with. For some, they haven’t found the right meds yet and are still suffering daily. Hearing these things isn’t helpful. We’ve been there already.

Examples of things people have said:

“Have you changed your laundry detergent/soap?”

“It’s your hair dye/shampoo”

“It has to be bed bugs” (seriously?)

“Change your sheets”

“you should try…”

”Is it what you’re eating, change of diet?”

“Just put some cream on it”

“did you see the doctor/ allergist”

“Looks like ringworm”

“it’s because you…”

“Your body is just detoxing all those chemicals you put in yourself”

“Have you tried antihistamines?”

“There has to be something you’re allergic to”

“Have you tried…?”

“Just take some Benadryl and an oatmeal bath”

2) Anything that minimizes our condition.

Chronic disease of any kind is nothing to minimize. It doesn’t matter if it’s a chronic toe infection, if it isn’t YOU who has it, you have no right to voice an opinion on how serious it is. You can’t live like this for weeks, months, years and “just get over it”.

People complain about mosquito bites but they don’t see how it would be such a struggle to live like this. There is a difference between breaking out in hives daily for an extended period of time and that one time you ate a strawberry or shrimp and had to take a Benadryl. You can avoid strawberries, I don’t have a solution, an allergy or obvious thing that I need to avoid.

The fact is, Chronic urticaria is a disturbing chronic illness with devastating impact on quality of life. I have had many women tell me that they have considered suicide due to the suffering caused by this disease. You simply cannot relate to what it is like to have to deal with this every day of your life, never knowing if it will go away. Chronic urticaria is often more than a skin condition with a multitude of other symptoms such as GI symptoms, joint pain, swelling, difficulty breathing, headaches, fatigue, brain fog, not to mention the side effects of the medications. Some have to carry an Epi-pen and fear for their lives due to anaphylaxis.

Please don’t try to minimize our suffering. Studies show that CU patients have quality of life scores similar to patients with severe coronary disease. Learn about it and have empathy for what we have to deal with rather than trying to minimize it. It doesn’t help, it makes us feel more misunderstood and isolates us further.

Things people have said:

“It doesn’t look that bad”

“You’re probably just stressed”

“At least it’s not terminal”

“It’s just hives”

“It’s only…”

“stop being over-dramatic”

“It’s nothing”

“get over it”

“It isn’t that serious”

“It could be worse”

“Oh, I get that when I …”

“Take some Benadryl and it will go away”

“Oh those, It’s not so bad, I mean it comes and goes”

“Oh well that’s just your skin issue ”

“It doesn’t look that bad”

“It’s harmless”

“It’s not even that bad, you’re so dramatic and it’s probably all in your head anyway”

“Oh that sucks, but I guess it’s better than being terminally ill.”

3) Mind over matter and hurtful observations

Hives are often associated with stress and though that can definitely be a factor, to say that it is all mental is far from true. It’s not as simple as “just don’t scratch” or “just don’t think about it”. Imagine having thousands of mosquito bites that itch like hell, tell me you could put that out of your mind or not scratch at all.

The absolute worst thing to say to someone with chronic illness is anything that indicates that somehow their illness is their fault, they are making it up, or they are simply a hypochondriac.

Some examples:

“Just don’t scratch”

“Stop stressing and it will go away”

“Have you tried not thinking about it?”

“Try meditating”

“It’s all in your head!”

“One day it’s just gonna go away”

“Do you really need all those tablets?”

“Is it contagious?”

“OMG what the hell is that on your skin? ”

“Wow, you look freakish”

“Are you sure it’s not in your head?”

“You sound like a hypochondriac”

Say it with kindness

If you feel that you must say something you really believe will be beneficial, ask permission to share.

My battle is daily. My burden is more than skin deep; it is exhausting, painful, isolating and embarrassing. It effects my health, my relationships, my career and my self worth.

We have cancelled dates, missed work, avoided friends, and spent many nights hating on ourselves because of how this can make us look and feel. A disease like this changes you. We have to stay strong every day. We have to work hard to love ourselves.

Please try to show some empathy. Think before you speak. Offer to help. Ask what you can do to support me. It can be as simple as a text asking how I am doing. If I can’t come in to work or have a drink with you, tell me you understand and hope I feel better. Don’t question my disease.

For me this is life.