Behind The Veil: How We Manage Invisible Illnesses

Amber Pietz, DN Design
Amber Pietz, DN Design

Being Okay With Being Not Okay

Kate Farr is a second-year journalism major and writes “Face to Face” for the Daily News. Her views do not necessarily reflect those of the newspaper.

During my senior year of high school and first year of college, I had a headache almost every day. Their persistence wasn’t the only issue — my head throbbed more violently than any headache I’d ever experienced.

It felt like every day was a different struggle. Sometimes, my contacts or the light from my laptop led to dull pangs of aching in the crown of my head. Other times, I was doubled over from nausea caused by the pain, unable to open my eyes long enough to get my schoolwork done.

I’d convince myself it was nothing — that this just had to be something “normal.” A normal occurrence that didn’t require a doctor's visit or necessitate adding to my list of medications, which I so desired to subtract from instead.

I’ve been taking prescriptions for both asthma and IBS since high school. And those are on top of my concoction of daily allergy medications and vitamins, like the iron supplements that keep me from passing out from the anemia caused by my deficiency.

It felt like a continuously growing pile, and I was adamant to keep it from growing — at least for a while. 

I tried to stave off headaches with over-the-counter pain meds, like the ones that got me through leg injuries during my cross country days. 

But the amount I was taking grew every day as I tried to drown out the pain. Eventually, they stopped working all together.

While my illnesses and disorders didn’t always make me look outwardly ill, I was suffering inside.

I knew I couldn’t keep acting like nothing was wrong. I was waking up with headaches that kept me in bed for hours with the curtains drawn, suppressing my appetite and making me feel like a prisoner to my own body. Yet, I continuously tried to convince myself pain wasn’t enough of an excuse or explanation.

It wasn’t until a few weeks before this semester started that I was able to get in with a neurologist. 

I was diagnosed with migraines — on the cusp of being completely chronic. The new prescriptions I tried desperately to avoid changed my life so drastically that I no longer minded adding to my pill intake.

Along with pain meds and pills that relax my blood vessels in the midst of a migraine, I was given a pill that prevents migraines in the first place. The pill is an antidepressant that has saved me both from debilitating migraines and my depressive flare-ups.

My chronic disorders don’t define me. However, having dealt with them has led me to become a more appreciative person. I feel fortunate to have access to doctors and medications that have improved my well-being, especially when nearly half of American adults under 30 don’t have a primary care system, according to data from KFF (previously known as The Kaiser Family Foundation).

I was lucky enough to have doctors that actually listened to what I was saying. They heard me, acknowledged my pain and sought to fix it.

I’m at a point where I feel whole and healthy again even with my invisible illnesses. The pills and preventative measures I take for my conditions are worth it since I’m no longer struggling to get through the everyday. 

Everyone deserves to feel that way. Everyone should receive the healthcare that allows them to live their life to the fullest potential. Even when the suffering isn’t always outwardly visible, there’s still the weighty baggage of pain that is oftentimes shouldered by those with invisible conditions.

Contact Kate Farr with comments at kate.farr@bsu.edu.

Invisible In My Illness

Elaine Ulsh is a second-year computer science and physics major and writes “The Occasional Observer” for the Daily News. Her views do not necessarily reflect those of the newspaper.

Sometimes I forget about it. You would think such a major part of my life would weigh heavy on my brain. But with the way my condition fluctuates, I sometimes forget I even have it. 

I have neurocardiogenic syncope (NCS). It’s a mouthful, I know. You’ll sometimes hear it called vasovagal syncope, but there’s a slight difference between the two. NCS affects the everyday life of those who suffer from it much more than vasovagal syncope does.

There are many triggers that can cause episodes of syncope — better known as fainting — for me. I usually pass out or feel like I will if I stand up too fast or if I’m struggling with sickness. However, it can also be caused by sudden anxiety, intense pain or the sight of blood.

The biological aspects of NCS before an episode are attributed to a spiking heart rate which suddenly drops, causing a fainting spell. 

It’s hard to explain the exact feeling, but it feels as if I’m melting away from reality, slowly being tunneled by my vision. Sometimes it can be scary, but other times it’s so fast I don’t have time to be scared.

Often when I stand up, my vision “cuts out.” It’s not unusual for me to say “I can’t see” to the nearest person while continuing what I’m doing. However, having lived with it for so long, I know my triggers, and I know simply standing will not cause me to pass out most of the time. I have become more than accustomed to it.

NCS is most common in teenagers and older adults. According to the Cincinnati Children’s Hospital, it is common for people suffering from the condition to grow out of it after several years. 

Having been diagnosed at 13, my parents and I were hoping this would be the case for me. However, my teenage years are coming to an end and episodes are as frequent as ever.

I have given up hope of “growing out of it.”

It is very easy for me to forget not everyone deals with NCS. When I was not feeling well during a class this year, I was reminded of this. I explained the situation to my professor, who then chided me for not having registered my condition with Ball State’s Disability Services. 

Honestly, the idea of registering for these services hadn’t even occurred to me. Yes, it’s something I deal with on a daily basis, but that doesn’t mean it “disables” me, does it? 

I haven’t considered my condition to be a disability, but rather an illness that affects my everyday life. Still, it’s an illness  I have never heard of anyone else having. And that can be rather lonely. 

According to the Invisible Disability Association (IDA), an invisible disability or illness is an ongoing “physical, mental, or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses or activities.” 

One of the main things the IDA is known for is Invisible Disabilities Week, which has been the third week of October for the last decade. 

Having a week of awareness for those who are not obvious in their suffering brings an awareness that may never have happened otherwise. It allows those with invisible disabilities or illnesses, like myself, to not feel so alone.

You never know what others are going through, and it’s even harder to know when they are struggling with invisible disabilities. It’s important we keep an open mind so the people who are already feeling alone don’t become more isolated.

Contact Elaine Ulsh with comments at elaine.ulsh@bsu.edu.

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