Mary is a 41-year-old former private tutor and tax preparer. She is the creator of #upgradeaccessibility
What illness(es) have you been diagnosed with?
Cerebral palsy, Sjogren's Syndrome, Fibromyalgia, Ehlers Danlos Syndrome Type III, Non-Celiac Gluten Sensitivity, Hypothyroidism
What’s your primary or most pervasive illness?
Sjogren's/Fibro
What is your earliest memory of having your illness?
January 2018 - finding out that my Sjogren's (SSA) marker was 7 times the normal level.
What was your diagnosis journey like?
Long. I spent approximately 1-1/2 years telling my primary care doctor that something was not right, that it was not just my thyroid that was the issue. He insisted that I was "just getting older" or "just depressed". I eventually started seeing a different primary care doctor who ran a battery of tests that my previous doctor had never bothered to run.
Are there different variations of your illness? If so, what is your specific diagnosis?
Yes - there is Sjogren's A & B - I was diagnosed with Sjogren's A
How has your illness affected work and/or school?
I have days where I am unable to work at all due to extreme fatigue and brain fog.
How has your illness affected your relationships?
When I am in pain caused by my illnesses, I tend to become short-tempered. I become withdrawn socially due to pain and fatigue.
Do you feel your loved ones care about how your illness affects you?
I live with my best friend and I feel as though she cares about how my illness affects me - she is one of few people I know who really understands.
What illness(es) have you been diagnosed with?
Cerebral palsy, Sjogren's Syndrome, Fibromyalgia, Ehlers Danlos Syndrome Type III, Non-Celiac Gluten Sensitivity, Hypothyroidism
What’s your primary or most pervasive illness?
Sjogren's/Fibro
What is your earliest memory of having your illness?
January 2018 - finding out that my Sjogren's (SSA) marker was 7 times the normal level.
What was your diagnosis journey like?
Long. I spent approximately 1-1/2 years telling my primary care doctor that something was not right, that it was not just my thyroid that was the issue. He insisted that I was "just getting older" or "just depressed". I eventually started seeing a different primary care doctor who ran a battery of tests that my previous doctor had never bothered to run.
Are there different variations of your illness? If so, what is your specific diagnosis?
Yes - there is Sjogren's A & B - I was diagnosed with Sjogren's A
How has your illness affected work and/or school?
I have days where I am unable to work at all due to extreme fatigue and brain fog.
How has your illness affected your relationships?
When I am in pain caused by my illnesses, I tend to become short-tempered. I become withdrawn socially due to pain and fatigue.
Do you feel your loved ones care about how your illness affects you?
I live with my best friend and I feel as though she cares about how my illness affects me - she is one of few people I know who really understands.
How has your illness affected your activities you do for fun?
It takes a lot of planning to be able to go out and do anything for fun and even then, sometimes I have to cancel plans because I am just too exhausted to make the effort to go out.
Do you have hope for relief for you? A cure? Or do you think your illness is forever?
I think it is forever - I am currently at a stalemate as far as treatment. Everything tried so far either doesn't seem to work or I end up being allergic to it.
Does the current treatment you're trying seem effective?
I am currently not receiving any treatment as I am between rheumatologists.
What things do you do to maintain hope? Activities? Belief system? Things you look forward to?
I just try to stay as active as my illness allows me to be. I look forward to weekends so I can have a chance to recuperate from the week.
Are there any projects for the chronically ill/disabled community that you are currently working on?
Yes! I have started a movement on social media called Upgrade Accessibility (@upgradeaccessibility on Instagram). I started the movement because I have noticed that today's accessibility standards are outdated and it is time something was done about it.
I have also started the hashtag #mynarrativematters. The disabled community is often expected to be seen and not heard. No more. It’s time that not only are our narratives heard, but we’re the ones telling them.
It takes a lot of planning to be able to go out and do anything for fun and even then, sometimes I have to cancel plans because I am just too exhausted to make the effort to go out.
Do you have hope for relief for you? A cure? Or do you think your illness is forever?
I think it is forever - I am currently at a stalemate as far as treatment. Everything tried so far either doesn't seem to work or I end up being allergic to it.
Does the current treatment you're trying seem effective?
I am currently not receiving any treatment as I am between rheumatologists.
What things do you do to maintain hope? Activities? Belief system? Things you look forward to?
I just try to stay as active as my illness allows me to be. I look forward to weekends so I can have a chance to recuperate from the week.
Are there any projects for the chronically ill/disabled community that you are currently working on?
Yes! I have started a movement on social media called Upgrade Accessibility (@upgradeaccessibility on Instagram). I started the movement because I have noticed that today's accessibility standards are outdated and it is time something was done about it.
I have also started the hashtag #mynarrativematters. The disabled community is often expected to be seen and not heard. No more. It’s time that not only are our narratives heard, but we’re the ones telling them.
