The Emotional & Mental Toll of Chronic Illness

To help bring some awareness as to what it’s like living with a chronic illness (and a rare disease at that), let me just start off by saying this: seeing a new doctor can bring on some very uneasy feelings.

Here are a few reasons why this might be difficult:

1.) You have to first find out who takes your insurance, which can be a frustrating, time consuming, inconvenient mess.

2.) You may need to find transportation and/or a sitter, adding in that common but false feeling of being a burden.

3.) There’s the cost of the visit and any tests or procedures that go with it. Keep in mind many chronic illness patients struggle to work to make ends meet already. Insurance also comes back into play here because they often have more to say over what you need than your doctor does.

4.) Then there’s the wondering of if the doctor will be one of the good ones, one who listens, is open-minded, researches, and tries to find answers as opposed to gaslighting or band-aiding the issue.

5.) Topping it all is the anxiety of not knowing if the doctor will even be able to help, or will all the effort of the above be a waste.

6.) To be discussed at the end of this post.

My recent visits with ENT & Audiology left me with a lot of mixed feelings for various reasons.

On the plus side, they were helpful in showing me a whole different possibility on why my symptoms could be happening (even though there were no solutions). They performed the Epley Maneuver to hopefully help with my vertigo, which seemed to have helped some. They were able to update my hearing test, which came back great, and they even performed a thorough balance test, which was also normal.

Nevertheless, this is also where the mixed feelings seemed to sneak up on me.

My Own Personal Gaslight

You ever hear news that is presented in such an exciting way, but it wasn’t exactly the news you wanted to hear?

Personal example: “Your hearing is beautiful!” – That’s wonderful news. But here we are again feeling like it’s all in my head, having no proof to show for all I experience. Obviously, nobody wants to be told they have hearing loss or auditory damage or anything like that. But there’s something smothering about being told everything is fine when it’s not.

My hearing is beautiful, but sometimes I hear my own breathing and heartbeat louder than the sounds around me. My hearing is beautiful, but sometimes it sounds like a bomb just went off, as if sound is clicking in or out, or that the treble around me is too high. Sometimes I think there’s a dishwasher constantly running, thunder rumbling, music playing, or a baby crying when there’s nothing there. There’s ringing, and there’s whooshing. There’s crackly sounds like pop rocks in my ears. But that’s ok because I passed my hearing test with flying colors. My hearing is beautiful.

My balance test was normal, but sometimes, I feel the floor drop from underneath me as if I’m standing in an elevator. Sometimes my head swirls or I veer to the side. Sometimes it feels my brain can’t keep up with my head turning or overcompensates movement. I’ve had moments of feeling so light that if someone tapped me, I might fall over. I’ve been carsick more times than I can count, and I can’t have my head in certain positions without the whole room spinning or shaking and vibrating back and forth. But my balance test results were normal.

This is one of the most frustrating and emotional parts about Intracranial Hypertension, having all of these tests done that show you are a perfectly healthy individual.

I’ve had my CSF pressure measured for days where it never surpassed a 10*. According to this test, I didn’t have IH, only headaches. Three weeks later, my pressure was caught at 52. (*Average/normal pressure can range anywhere from 6-25.)

I’ve had perfect eye exams revealing no issues, making it unlikely that IH was the problem. Not long after, a blind spot appeared, my vision would go black, and my optic nerves were found to be swollen from the high pressure.

I physically appear fine. After all, IH is mainly known to affect those who are overweight or obese, and I am not. Therefore, it must be migraine, right?

I’ve had more tests than I can remember – MRI’s, MRA, MRV, CT, X-rays, angiogram, venogram, ultrasound, ICP monitoring, and so on – all of which showed no issues.

That should be wonderful news, obviously, but how do you think that makes one feel when they are debilitated by pain and sickness every day, yet everything is beautiful?

I’ll tell you; it leaves you with a maddeningly hopeless feeling.

You either become determined to prove yourself, or you become disheartened and want to give up and suffer alone. You try to force the symptoms for justification, and you try to hide the symptoms that apparently don’t exist. It’s a mental and emotional game that cycles through time and time again.

Do you know how many IH patients rejoice and cry tears of joy when they receive their diagnosis? I would bet to say just about all of them. No, we do not want to be sick, but it sure feels good to finally be believed. It feels like a miracle to have an invisible illness finally become visible.

Why? Because then we no longer feel crazy. It’s no longer all in our heads. We’re finally taken seriously which means proper research and treatment can begin.

Reason #6

When my vestibular symptoms ramped up this summer, I felt they were trivial. I never realized that my attempt to have them addressed would uncover so many buried emotions. I didn’t see it leaving me in a terrible mood after my appointments, unable to understand exactly why I felt the way I did, and I certainly didn’t see it affecting me in the middle of church, making me wonder where God my Healer was.

So to go back to our list of reasons why seeing a new doctor can leave you feeling uneasy, #6 would be that medical trauma might be reopened. Is this a bad thing? Not necessarily. But good things can be hard too.

I started this series feeling as if every post included was petty and lengthy at that. But part of overcoming trauma is addressing it, and I made sure not to leave out one word that I felt I needed to express.

This outreach of Weather in April focuses strongly on living life despite chronic illness. Sickness has no power over us, and our mind can and should be renewed daily to believe this. The fight can be difficult, but our health is worth it.

If you are struggling with the toll chronic illness can take, please do not hesitate to reach out.

 Continue reading series here:

• Part 1 : My IH Journey – The Auditory Experience
  
• Part 2 : My IH Journey – The Vestibular Experience
• Part 4 : The Auditory & Vestibular Experience (Continued)
• Part 5 : What Must I Do? (The Spiritual Toll of Chronic Illness)