My Life in the Bathtub: Living with an invisible disability

By Terran Warden

In 2011 Japan was hit by a 9.0 magnitude earthquake and tsunami, killing nearly sixteen thousand people.

Prince William married Catherine Middleton at the “Royal Wedding”.

Osama bin Laden was announced dead after a United States military operation.

And I was diagnosed with Chronic Idiopathic Urticaria combined with Dermatographia.

Urticaria is the formal name for hives and welts. To be chronic they must occur daily or almost daily and to be idiopathic there must be no obvious cause like diet or allergies.

Chronic Idiopathic Urticaria (CIU) has baffled doctors of every field for years. The only connection that’s been made is a relation to the immune system in some way – but even that doesn’t really help.

CIU lasts for around five years in 20% of patients diagnosed (but I’ve passed that mark… sad face) and lasts twenty years or more in only 1.5% of patients. Unfortunately, I think I fall into that 1.5%

Dermatographia, also known as skin writing, refers to the main type of hives and welts I get. Every. Single. Day. Dermatographia, on its own, is a seemingly harmless skin disorder and is said to only affect 4-5% of the population. With dermatographia, any skin that is touched (even just barely) becomes red and raised but less itchy than hives.

So let’s just say a long day of trying on clothes – like prom dress shopping – is a hard day on my body. The path of each dress over my shoulders and collarbones is traceable for around thirty minutes.

Starting in 2011 I was prescribed the antihistamine Zyrtec, which I took every morning. When it stopped working and my hives never went away, my prescription was doubled to two Zyrtec pills a day. When that stopped working I was prescribed an additional rantidine as well as doubling my already doubled Zyrtec every day. If you’re keeping track that’s five pills a day. So far.

Again the prescriptions started to not be effective with my eyes filling with hives in the morning and at night. Doctors prescribed the steroid Singulair on top of two Zyrtec and one rantidine every morning and every night. That’s seven pills a day.

Seeking a way out of endless pills that were more and more ineffective, my mother and I found emu oil to stop my hives on contact. I know it sounds weird but when you wake up battling your body, every single day, you’ll try anything. With the addition of emu oil, I’m down to one Zyrtec and one rantidine pill in the morning only.

With my autoimmune disorder seemingly under control, I’ve fallen into the category of invisible disabilities. My body attacks me from the inside and it’s taking its toll on my outlook on life but it isn’t apparent like if I were in a wheelchair.

But with the start of school, I found myself in a new problem. Along with the hives my skin has begun to ulcer. Well my doctors and I haven’t quite decided if it is skin ulceration or lesions. Either way, my skin appears burned, raw, and stings.

Every day of this semester I have started the day getting up extra early to soak in a bath of baking soda. Not as a cure — there seems to be no cure at all — but just to tolerate being awake. And every day of this semester I have ended the day with another baking soda bath, no matter how late I’m studying.

My life in the bathtub has made my skin ulcerations manageable. They appear to go away but if I skip a bath they come back.

I know taking baths doesn’t sound very bad, I know this may come off petty, but I don’t want to live in my bathtub. Being a slave to your own body that won’t stop attacking itself is mentally debilitating. After long days of class with nothing to comfort my skin I found myself crying in my car when I went to drive home.

I’ve found myself comforting myself with food and living in sweatpants just to keep my skin untouched. As someone obsessed with fashion and beauty, that in itself is a mental torture of its own kind.

My CIU is caused by the antibodies in my immune system targeting my body’s own tissues.  CIU is usually connected to other autoimmune disorders such as hypothyroidism but I’m not sure if mine is. My doctors weren’t eager to get down to the bottom of my issues and I think I was scared to know the answer. But with my issues becoming more severe I’m left with no choice and have filled all the extra time I have as a full time student with doctors’ appointments.

If you have class with me, you would never know the struggles of my everyday life. Unless you’ve seen me when I’ve missed my medication or my medication just didn’t work.

People always say to be nice to everyone you see because “everyone is fighting a battle you know nothing about.” I’ve seen it splashed across Facebook, Instagram, everywhere since I was in middle school. But the phrase usually relates to depression, anxiety, and other mental illnesses.

An estimated 10% of the population have an invisible disability of some kind and invisible diseases and disabilities like my CIU is just as hard of a battle. The drive in me to get up every morning diminishes more and more as time goes on. Nobody truly understands what it’s like, no matter how hard they try.

But I’m still here. I’m still in class every day. And I’m still working to end my CIU. The hope is that 2017 can be marked by my healing the way 2011 was marked by my diagnosis.

Invisible disabilities are all around you. Invisible disabilities matter. And we no longer want to hide it.



Categories: Campus, Community, Diversity, Health, Opinion, Student Life

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