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The Loneliness of Chronic Illness

No man is an island... unless that man is chronically ill.  Chronic illness makes islands of all its victims. 

Y'know that feeling everyone has as a teenager? That "no one understands me" feeling.  Take that and multiply it by a million and that's chronic illness.  At least when dealing with teenagers, people have a point of reference, since they were once teenaged themselves.  The same can't be said about chronic illness.  With chronic illness you don't get it 'til you literally get it.

I'm going to be honest here, I don't know how to cope with the loneliness that accompanies chronic illness.  It is so gut-wrenching and all-encompassing.  It's not just the literal state of being alone, either.  Along with the physical solitude comes the mental.  I could be in a room full of people and still feel utterly and hopelessly alone, because everyone in the room is able to function so seamlessly while I'm trapped in a cage of my unreliable body…

An Open Letter to My Conservative Friends and Family Members, From a Young, Disabled Woman in America

An open letter to my Conservative friends and family members, from a young, disabled woman in America:
Whether you’re willing to admit it or not, the upcoming election will have a massive impact on my future as a disabled woman in America.I know you have set political beliefs, and I know that they’re founded on certain principles.So many of those principles are broad, impersonal and hypothetical, and I simply wish to illuminate the very real, dangerous consequences that will affect me and people like me if the country were to continue on its current path.
I am a disabled woman, and I will be one for the rest of my life.I will need doctors for the rest of my life.I will be on medications for the rest of my life.I will probably be unable to hold a job for the rest of my life.At the moment, my family and I are privileged enough to have little to worry about financially, which is something I am incredibly grateful for and I do not want to take for granted.However, things can change in an i…

Keep In Mind, Our Time Runs Differently

You seem to forget that I’m constantly treading water.Day in and day out, I am trying to stay forget the totality of all I have to juggle.9 chronic illnesses, 3 mental illnesses, never-ending all-encompassing pain.I know i carry it well.I make it look easy, manageable.So you forget.And you expect things from me.Things I cant give.Things I shouldn’t have to give.You’ve gotten so used to my ability to overcome, that you believe I should take everything in stride.No one should have to live up to expectations like that.I am allowed to take breaks, whether you approve of them or not.I am allowed to feel things in ways you may find unacceptable.I am allowed to prioritize things differently than you.I have a perspective that you may never understand, but that you must accept.And if you do something that puts me at risk, or triggers me in any way, you may not dictate how I respond.For years I have lacked bodily autonomy.My body is not under my control and I have adjusted to that.At…

The Complexities of Having Able-Bodied Friends

Being disabled and being friends with able bodied people is way harder than anyone realizes.We’re constantly being left behind and overlooked. As they move forward in their lives, we have to sit back and watch them go.No one wants to admit it, but it gets really hard to be happy for them after a while.They graduate college, awesome!we’re stuck in bed in pain.They get their dream job, great!We’re stuck in bed in pain.They get married, nice!We’re stuck in bed in pain.They drift further away the more they accomplish.It’s only natural.They get busy and they get tired of hearing about your doctors appointments.They stop asking how you’re doing because they know it’ll be the same answer as always.Then suddenly the things they complain about make you roll your eyes.The occasional headache, an annoying coworker, a pulled muscle, their husband snores… but they have their health, and they’re taking it for granted.It’s infuriating. It’s gut-wrenching. It’s heartbreaking.We are losing them.

A disa…

When Chronic Illness Makes Me Feel Worthless

There are days when I feel absolutely worthless. Days where I contemplate the reality of my life, and seemingly everything comes up short. 
Let’s go through the list of disappointments, shall we?I am a 21 year old 3-time college drop out.I have maybe one semester of college completed, and most of those units come from AP classes I took in high school.I haven’t had a job in 3 years.The only job I’ve ever had was dressing up as a princess for kids birthday parties so my overall work experience is lacking.Last summer I tried dogsitting for two weeks and I got so insanely sick from it that my parents had to take over because I collapsed in my cousin’s driveway and literally couldn’t move for 3 days. I have zero income. I applied for Disability benefits and was denied because I never held a job that paid into social security.Isn’t it dumb that I can’t work due to being disabled and I can’t get Disability because I haven’t worked?I haven’t driven for 7 months.I volunteered at a hospital last…

Chronic Pain, Explained

To people who don’t understand chronic pain:
What a lot of people don’t understand about chronic pain is that it’s unrelenting. 24/7 365 days per year, we are in pain. Even when we’re smiling, even when we’re sleeping. There is no end.and that takes a physical and emotional toll.
Think about how frustrated you are when you stub your toe, or how miffed you get when you put hand sanitizer on a paper cut.Think about how you’re constantly aware of and irritated by a canker sore or a hang nail.
Now consider this: the amount of pain we are in on a daily basis would put you in the emergency room, no question. We have no concept of what a zero on the pain scale feels like anymore.We’re lucky if we get down to a 3, and even then, our 3 is your 6, and our 6 is your 9.We live our lives as functionally as possible in an amount of pain with which you would not be able to function.
A lot of the examples I used earlier are singular injuries, however most people who suffer from chronic pain suffer from m…

Health Update: Nov 2018-Jan 2019

At the end of last year, after almost 3 years of chronic illness, I managed to get 3 new diagnoses in 3 months.

It all started in November.  My fancy USC neurologist ordered a repeat skin biopsy, and a tilt table test.  My first skin biopsy, taken over a year prior, had come back clear, so I didn't expect this new one to yield any results.  This skin biopsy, however, came back positive for Small Fiber Neuropathy, something I had been convinced I had since the early days of my chronic illness.  Seriously I knew I had this disease all the way back at the beginning and no one listened to me.  It didn't help that the last biopsy came back negative but apparently there can be false negatives which would have been awesome to know at the time.

Then came the tilt table test. For those who don't know, a TTT is a test in which you lay flat on a table, your vitals are taken, then the table itself moves into an upright position and your vitals are monitored for like 45 minutes.  The t…

How Chronic Illness Has Empowered Me

For the first year and a half of my chronic illness journey, I did everything I could to keep my illness a secret.  I thought that if I could just get a diagnosis I could get better, get back on track with my life, and no one had to know I was ever sick.  I spent that whole year and a half planning out how I was going to reorganize my future after I bounced back from what I thought was just a momentary setback.  I mapped out my college education so that I could still graduate the year I was supposed to, I continuously messaged my old boss telling her I just needed a few more months off in order to get better, and I mentally changed my desired career path at least 10 times.  I was so ashamed of dropping out of college that I tried to take one online class per semester, just so I could say I was studying something.  I did everything I could in an attempt to hold on to some sense of normalcy.  I was in denial about the decline of my body, and in my mind, the worst case scenario was peopl…