There are not enough words to adequately describe the impact of chronic pain on every facet of my life.
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.
Ok so here’s the deal, in less than 10 days my dissertation defense will happen and my angst is high
I’m not nervous about what I know as it pertains to my dissertation; but I’m concerned about the what’s next questions that are flooding my mind
This is bad because the illnesses that reside in my body react badly to stress…really bad.
My thoughts are jumbled; I’m frustrated and I’m ready to scream
I must find a way to calm my mind and balance myself.
I must relax or else I won’t make it through my dissertation defense because I’ll be nursing a flare.
Why are my illnesses stress- sensitive ?
Chronic illness warrior, chronic pain survivor, spoonie, chargie, dis-Abled, fighter, and all of the other labels used among individuals who face a myriad of long term illnesses….
It matters little how I refer to myself when I’m at a place where I feel there’s nothing I can do to overcome, conquer whatever my illness has brought to me.
The labels tend to carry little meaning when I’m facing the implications of my illness alone
They matter even less when I’m sitting in yet another physicians or alternative health professionals office and/or waiting room…
So why do I find such comfort in whatever label I choose for the day? Although it seemingly doesn’t change the trajectory of my chronic illness or the acknowledgment of my pain by others?
These labels may have little meaning outside of the communities they create which often transcends an individual’s immediate surroundings.
These labels thrive in cyberspace and it’s easy to see how certain events in the real world are crafted around these labels.
Personally, I’ve found them useful in cyberspace and I’ve enjoyed the disconnect in the connections I’ve created through these labels.
I consider it a disconnect because I only checked into these communities when I felt the desire to…otherwise, I stayed away.
Some years, I was connected to various chronic illness themed communities on a daily basis…I was even an administrator of one such community at one point
But once I received what I needed or at least once my outside support system stabilized, I relied on the amazing community less.
Now, I’m not a part of any particular community of chronic illness individuals. At times, I miss the relational aspects of the communities, I miss the feeling of being a part of something bigger, the feeling of not being alone…but for the most part I don’t miss it enough to immerse myself into any of these communities again.
It became overwhelming as I shared my story, my experiences with so many who could relate…it was sometimes overwhelming to witness the pain and suffering many of those individuals in these groups shared.
Now. I’ll mention various chronic illnesses or pains I endure, but I don’t want to be consumed by it anymore.
My illnesses impact every facet of my life daily…but my needs are different than they were years ago when I had to plug into the communities to maintain a semblance of sanity.
I’m forever grateful for the groups and the amazing people I’ve had a chance to interact with throughout the years of my intense involvement.
The chronic illness related pain failed to read and/or comprehend the memo which stated:
To Whom It May Concern:
The deadlines are fast approaching and must be met. There’s no acceptable excuses for said person to miss these deadlines. Reasonable accommodations were made and any extensions beyond those suggests that said person is unable to adequately perform the tasks.
The Deadline Committee
Well, back to the chronic illness related pain that failed to read and/or comprehend the memo and decided instead to flare when I (aka said person) desperately needed to write in order to meet the deadline committee’s demands.
Clarity statement: NO committee or individual gave me such a deadline notice…IRL
Flares – how appropriate is this word for the unpredictable, destructive way endometriosis and similar chronic pain disorders interrupt your life.
Like a flare of fire even if you avoid looking at it, the heat still makes it known. With endometriosis I often refuse to pay attention to the outrageous pain…yet it continues.
Since my childhood I’ve managed to have really good, attentive physicians…this was priceless since I had many mysterious and/or chronic ailments.
Even at birth, I required specialized medical care.
Well, I’m an adult now – my childhood and teenaged years , and twenties are things of the past now.
I’m in one of what will likely be many awkward transition phases of life. The place I’m at now is not my home and I’ll likely be somewhere else next year this time.
That brings me back to doctors! As I’ve expressed before I have endometriosis and several of its sister/cousin ailments…my body also possesses some unlikely ailments.
In the ideal world I would be managing these ailments under the care of a physician…but in my reality, I haven’t went to a physician in months
I spent a lot of time at doctors’ offices and in waiting rooms…so now I’m more hesitant about going and I’m more willing to suffer in silence.
Trust me I know this isn’t smart but I’m tired of doctors. I don’t want to build rapport with anyone, let alone another physician
Especially since this relationship will be short lived
The problem is that endometriosis and the various ailments are getting the best of me.
I don’t know how to start finding a good doctor…my last doctors just kind of feel into my lap and they were wonderful
Due to my latest relocation and insurance network – going to these physicians is impossible.
How do I motivate myself to find a doctor to treat the ailments I’ve been suffering unnecessarily with?
Is it even worth it to start another relationship with another doctor ?