After the Honeymoon: Chronic Illness in the Workplace

October is National Disability Employment Awareness Month (NDEAM). Therefore, it seemed like a good time to tell parts of my story relating to being “disabled” with chronic invisible illnesses as a young adult in the workforce. A lot of the patients I hear from faced the challenges of developing these illnesses in their 40’s (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce. At 45, it’s hard enough to give up your job – at 15 (age at diagnosis) it’s really not an option. Hopefully what these patients went through can help me in this challenge.

In my last post, “Once Upon a Time: A Tale of Disclosure”, I discussed my decision to disclose my illnesses to my firm before I was hired full-time. Now, I’d like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation. To be clear, I’m not suggesting all other chronic patients follow in my [...] continue the story

Father and son, doctor and grieving family member

The edges of Cameron’s lips rise undeniably toward the clear blue sky. His legs move methodically. One motionless on the scooter and the other periodically kicking to propel himself forward. He weaves in and out dodging my shadow as I jog beside him.

I struggle to keep pace. My breathing unsteady and labored. My joints aching. And my brain foggy from lack of sleep and replaying the events of the day.

***

The hospital was uncharacteristically quiet. Even for 5am. My eyes fluttered with fatigue as I willed my mind to focus after two nights of countless interruptions. I felt no joy in this early morning excursion.

The room was lit by a small lamp. A woman in her forties sat with a young child curled on her lap. A boy, Cameron’s age. My eyes adjusted to the absence of light.

The middle aged man lying on the bed looked far older then reality. He took deep irregular breaths. Each pause a question. His wife held his hand gingerly. I inhaled the seen cautiously. I couldn’t help but think of my dad. Were his last moments like this?

The woman dabbed her eyes with a tissue. She tried to move slowly to avoid waking up the [...] continue the story

The Vicious Financial Cycle of Chronic Illness

There comes a time in the life of a person with a chronic illness when a vicious cycle begins and the consequences of their temporary or permanent inability to work due to their chronic illness is compounded by their mounting medical bills. They get sick, so they can’t work; but they need to work, to pay for being sick. As the chronic illness becomes more persistent, it becomes increasingly difficult to stay ahead of this cycle. This is when the availability, or unavailability, of money and wealth becomes the sole determining factor of survival and happiness. On second thought, survival is not so much affected because of the mitigating and temporary stop-gaps provided by medical insurance and credit cards. However, living with the obligation to pay for these outstanding staggering and always increasing medical costs represents the “difference” between mere existence and truly living life and thus experiencing even occasional happiness. If you do not have the money and wealth necessary to keep up with this chronic illness cycle, some look to Bankruptcy as a strategy for negating this “difference.” But if the illness is indeed chronic in nature and/or incurable, there will [...] continue the story

Madness in the NFL – The Greg Montgomery Story

A glimpse into Greg Montgomery’s high school, college and NFL career. From his high school dream to play in the NFL to the manifestation of bipolar disorder in 1997 and his current coaching and advocacy work in the mental health arena.

I Had Cancer, A People’s History of the Disease. This is Heatheran’s Story.

Heatheran talks about her experience with ovarian cancer. She is a survivor but becoming one was not easy, this is her story.

So What If My Baby Is Born Like Me Part 1

Jono Lancaster, 26, (featured in BBC3’s Love Me Love My Face documentary) has suffered rejection and discrimination his entire life – all because of the way he looks. Born with a rare genetic condition, Treacher-Collins syndrome, Jono has no cheekbones or external ears and has endured years of bullying and countless hospital appointments.

The nature of the condition means that any child Jono fathers will have a 50 per cent chance of contracting Treacher-Collins. Now Jono has an important question he wants answered – what if my baby was born like me?

The film follows Jono and his girlfriend Laura as they go on a quest to find out the options available to them should they decide to start a family. Jono meets a variety of families who have faced or are facing this very conundrum. He also meets with youngsters affected by Treacher-Collins to see if attitudes have changed since his days at school.

Confronted by all the options, what will they decide? And will the decisions they make draw them closer together?

So What If My Baby Is Born Like Me Part 2

Jono Lancaster, 26, (featured in BBC3’s Love Me Love My Face documentary) has suffered rejection and discrimination his entire life – all because of the way he looks. Born with a rare genetic condition, Treacher-Collins syndrome, Jono has no cheekbones or external ears and has endured years of bullying and countless hospital appointments.

The nature of the condition means that any child Jono fathers will have a 50 per cent chance of contracting Treacher-Collins. Now Jono has an important question he wants answered – what if my baby was born like me?

The film follows Jono and his girlfriend Laura as they go on a quest to find out the options available to them should they decide to start a family. Jono meets a variety of families who have faced or are facing this very conundrum. He also meets with youngsters affected by Treacher-Collins to see if attitudes have changed since his days at school.

Confronted by all the options, what will they decide? And will the decisions they make draw them closer together?

So What If My Baby Is Born Like Me Part 3

Jono Lancaster, 26, (featured in BBC3’s Love Me Love My Face documentary) has suffered rejection and discrimination his entire life – all because of the way he looks. Born with a rare genetic condition, Treacher-Collins syndrome, Jono has no cheekbones or external ears and has endured years of bullying and countless hospital appointments.

The nature of the condition means that any child Jono fathers will have a 50 per cent chance of contracting Treacher-Collins. Now Jono has an important question he wants answered – what if my baby was born like me?

The film follows Jono and his girlfriend Laura as they go on a quest to find out the options available to them should they decide to start a family. Jono meets a variety of families who have faced or are facing this very conundrum. He also meets with youngsters affected by Treacher-Collins to see if attitudes have changed since his days at school.

Confronted by all the options, what will they decide? And will the decisions they make draw them closer together?

So What If My Baby Is Born Like Me Part 4

Jono Lancaster, 26, (featured in BBC3’s Love Me Love My Face documentary) has suffered rejection and discrimination his entire life – all because of the way he looks. Born with a rare genetic condition, Treacher-Collins syndrome, Jono has no cheekbones or external ears and has endured years of bullying and countless hospital appointments.

The nature of the condition means that any child Jono fathers will have a 50 per cent chance of contracting Treacher-Collins. Now Jono has an important question he wants answered – what if my baby was born like me?

The film follows Jono and his girlfriend Laura as they go on a quest to find out the options available to them should they decide to start a family. Jono meets a variety of families who have faced or are facing this very conundrum. He also meets with youngsters affected by Treacher-Collins to see if attitudes have changed since his days at school.

Confronted by all the options, what will they decide? And will the decisions they make draw them closer together?

Extraordinary People – The Man With No Past Part 1

On 4 December 2005, David Fitzpatrick’s memory was wiped clean by a rare condition known as psychogenic fugue (Wiki: Fugue State), leaving him with no identity.

This documentary follows the 25-year-old’s painful journey to recover his life and his memories. As he visits his old school, his childhood home and his old football club, David is hopeful that he can fill in the blanks. However, he is also apprehensive about what he may uncover, particularly what would have prompted his brain to go into shutdown.