Tag: disability

Let’s talk about today…

I’m in the land of the living; however, most of my residence today is in the I Am Chronically Unwell camp! That’s no problem!

Well it’s a bit of a problem…let me explain.

I’m what most people would consider invisibly unwell. Meaning that there’s not many external markers that give away my membership in the club of chronically unwell and/or sick individuals.

There’s millions of individuals who have invisible illnesses so that’s not the problem.

The problem is that at times my acting skills are so good that even I forget that chronic ailments take up residence in my body. Yes, acting skills! Day in and day out I purposely put on my best face and I muster up all the strength I can to downplay my membership to the chronically unwell club.

Through the years I’ve worked hard to not allow my ailments to define me. We’re not going to get into how psychological, physical, and emotional damaging this mindset can be when it has limited impact on the true state of illness.

I won’t say that this acting is a bad thing, neither will I declare it a good thing…I’ll let you draw your own conclusions. I’ll just say the acting is what I do on a daily basis. Acting as if I am free of any ailments despite the fact that my body is riddled with ailments became my way of life decades ago. So much so that presently acting well is simply a habit now.

Sigh. So when I have days like today when my illnesses outweigh my acting skills and I must pause…I struggle.

I struggle because I’ve spent so much time pretending to be well that I forget how to tend to my illnesses.

I struggle because no one is used to me saying no or being unable to participate in whatever activity they want me to.

I struggle because on those days (today) I’m forced to look at myself and see the illnesses that I fight so hard to ignore.

I struggle because the illnesses impact my entire being.

You’d think I’d only experienced days like today once every three years, the way it seems to knock me down. You would think that there’s no warning signals and that I’m always caught by surprise based on my reaction to days like today.

None of that is true.

I frequently experienced days like today. There’s generally always warning signs and I even take steps to prepare for the life interruptions. Yet, I’ll never get used to the toll days like today take on me.

Days like today will be familiar, yet foreign.

Single-sided Deafness and Me

First, I live with single-sided deafness which is known by other names; however, I use the term single-sided deafness to convey the significance.

When I’ve told people that I have unilateral hearing loss, they believe that my non-functioning ear works with amplification

This usually results in people yelling at me or purposely making what I assume to be loud noises in my affected ear.

I rarely even say that I live with single-sided deafness, most often I choose to say that I am deaf on my right side. This often confuses people but I don’t have to endure their “battery of tests” – having my ear yelled into and people clapping their hands near my affected ear.

I was not born with single-sided deafness, but for most of my life I’ve had ear related issues. From early life until now, I have many ear infections. I had a speech impediment as a child and my hearing was a part of the issue. I had balance issues and my ears were the suspected culprit.

No one really knew what was going on at that time and I didn’t have a preferred health insurance plan —- here in the USA, your health insurance plays a significant role in the type of care you have access to.

Eventually, I was diagnosed with Meniere’s Disease and placed on a salt free diet for over a year. This was right before I graduated high school so the specialist I saw was located in the town that became my home during undergraduate.

I had a few specialized procedures and follow up appointments with the specialist.

Oh it’s important to note that my hearing was still in normal ranges at this time – in both ears. I had followed the salt free diet so well that when my time was up to eat this way – I basically stuck with it.

The main difference is that my parents didn’t have to trouble with preparing me a separate salt free meal.

During undergrad my sodium levels dropped too low and the specialist suggested I go to a popular restaurant, order their famous fries and ask for extra salt! Yeah, I never did that but I did eat more pickles and a few other salty foods. It took awhile but my sodium levels returned to normal ranges.

Two specialists warned me that I’ll likely lose my hearing – based on the available clinical information – as a result of many factors including Meniere’s Disease. I didn’t think much of this prognosis since no one could tell me when or if it would certainly happen.

Years passed and I started having issues with balance and it felt like my right ear was filled with water. I went to a primary care physician who treated the ear infection that I seemed to always have!

My ears felt better and I ignored the fact that I would put the television on mute because it sounded distorted; or how I would look in the wrong direction when someone called my name; or how when I wore headphones it felt as if my right ear was stopped up.

The balance issues worsened. I was seeing a neurologist already so tests were run to determine if the problem was neurological. I could not afford to see another specialist at the time.

I waited until my migraines (the reason I was seeing neurologist) were under control and more of my deductible was paid before I made my way to an Ear, Nose and Throat doctor.

By this time I was in my late 20s. My insurance was slightly better than it was when I was a child – but I had the income of a full time graduate student…it was low!

My income and insurance were significant players in my decision to seek care for my ailing ear.

My first appointment with the ENT was devastating. I recall the audiologist asking me how was I making it in my classes? I looked at this individual like huh? I didn’t do that bad on your little annoying tests!

I even asked this person why they didn’t play the noises so I could beep in. Still, in denial! I honestly thought that there was a long stretch of silence during the tests.

Even after a sound processor band was placed on my head and suddenly the stretch of silence ended – I preferred to believe that there was a purposeful long stretch of silence in the hearing test.

This belief was much better than the fact that I really couldn’t hear well.

The ENT discussed the audiologist’s findings with me and ordered more tests.

I was on auto pilot because I refused to believe that anything was truly wrong with my ears – other than the all too frequent ear infections!

That was in 2015. Once I left the doctor’s office and called/text my friends and family to inform them that “my right ear was simply decorative” – this was my description!

I cried and wondered if things would’ve been different if I had better insurance as a child or even if I went to doctor at the first sign of a problem. Then I questioned whether the ear problem was overlooked by the physicians I did see because of the much larger issues at the forefront.

Eventually I went back to the audiologist and chose the specialty hearing aid system to improve my quality of life. The hearing aid system was the least affordable option; however, it was the most convenient at that time in my life.

I’ve had the tubing changed several times since my introduction to the world of hearing aids. I’m long overdue for new tubes now.

But once again my income and insurance influences the medical care I even attempt to obtain. As I’ve shared I recently graduated and I’m on the job market with no income…this means no health insurance either.

I’m no longer in denial about my single-sided deafness; but even after all of these years the hearing aid system that was once convenient doesn’t work well for my changing lifestyle.

But most importantly the hearing aid system’s tubes are long overdue for replacement…which means I’m not using them!

Single-sided deafness has been interesting for me. It’s one of the most difficult diagnoses I’ve ever received and I’ve received many.

Plus I’m tired of individuals checking to see if I can hear anything in my right ear. Those tests are just horrible.

Accommodations & The Job Search

The Americans with Disabilities Act (ADA) became law in 1990; it marked a major legislative change in civil rights law.

Basically, the law states that it’s illegal to discriminate against any individual with disabilities and it states that reasonable accommodations are made in areas related to public life.

Laws are subject to interpretation and ADA is no different; therefore, several changes have been made to the legislation since its initial passage.

Anyone in the United States who has a disability knows that the way you are treated depends a lot on the presentation of your disability. This is one of the reasons there’s many forums about invisible disabilities.

How does all of this impact the job search? It depends.

Remember that as a country, we are keen on appearances (gross overgeneralization, but focus) so if you are able to not disclose your disability during the hiring process…maybe at this stage your disability has little impact on your ability to acquire employment.

That’s not necessarily the case, but it’s an argument made a lot when individuals battle for the winner of the “most disabled disabled person” – it really does seem like there’s a competition for such title.

As I read job announcements I notice immediately how the wording alone eliminates a group of individuals who could do the job with reasonable accommodations – if any are necessary – but these individuals are discouraged from even applying

For instance, in the fictional world in my head – there’s a job posting that says that the individual must be able to work long hours while sitting. The individual must be able to communicate effectively via phone and email. The individual must be able to hear and see.

I’ve seen all of these things mentioned in real world job advertisements. Take a step back and think about the array of disabilities…how many individuals are discouraged to even apply because they have to have bathroom breaks, they use specialized phones, hearing aids, or visual aids -other than glasses or contacts, or they need to stand after sitting for so long.

Many employers promote anti-discrimination and equal opportunity, but like the with ADA, policies and practices are not always on the same page.

It’s important that individuals think about the wording of job announcements to decrease the chances of discouraging an otherwise qualified individual who just so happen to have one or more disabilities.

Rest required

I have a few chronic illnesses, some that I’ve written about in the past…it doesn’t matter what they are, just know that they exist and they impact every facet of my life.

I recently defended my dissertation (Yay Me!!!) now it is time to focus on job hunting (Why me?) and this is where chronic illness is front and center.

So I’ve lived with these chronic illnesses for many years and I’ve achieved my educational goals…although things never went smoothly…and now I’m exhausted

I have important people to contact, cover letters to compose, and applications to complete…but I’m tired.

I’m not only tired from the arduous process that is a doctoral program…my chronic illnesses are screaming at me to pause temporarily.

My chronic illnesses are suggesting that I breathe, meditate, then rest. Sigh.

As many of you know, application deadlines and all the many things necessary for getting a job fails to account for the fact that your (my) chronic illnesses demand that I rest.

Some of you may even go so far as to say, if I need rest during the application process, I’m likely not able to do the job for which I am applying.

Then there’s others who would say that the PhD process is tedious and the typical person would need a break, so it’s not unusual that I need a break…in the form of a short rest.

The problem I often face as a result of being chronically ill is that I wonder if I’m being lazy or I really need the rest.

Those closest to me suggest that I simply need the rest, but even that’s not always convincing enough to stop my negative self talk

As someone with chronic illnesses, it is hard enough to deal with some outsider suggesting that you are lazy, incompetent and yet many of us, myself included engage in negative self talk when our bodies demand self-care.

I am someone who possesses chronic illnesses, but I’m also more than that. I am someone who needs accommodations, but I’m also more than that. I am more than any identifier I possess…if only I consistently believed that.