Last week, we shared our first patient story from a member of our community. This week, we’re sharing a little more from our Public Relations director, Marie.
I can vividly remember the first month of being sick, even though I did not realize I would be chronically ill at the time. I was in a great place in my young life and was going to school on an academic scholarship, I had a work-study position at the gym (perfect since I loved working out), I had great grades, friends, and opportunities ahead of me.
Everything was falling into place for me to have a “normal” college experience, graduate, get a job as a Licensed Clinical Social Worker, and live my best life. Looking back, I should have known that I was due for my world to be shaken up a bit!
Over Thanksgiving break, I went to visit my family and left with a terrible case of Norovirus. I was able to make it back to campus and noticed my stomach felt a little funky. I grew up having a sensitive stomach, so at first this seemed to be somewhat normal. A few hours passed and I was back in my dorm vomiting everything I had eaten and drank that day and experiencing diarrhea. I had just moved into a single dorm, so I did not have a roommate and didn’t know anyone in my building. My parents were four hours away. I remember actually thinking I was dying. This progressed for about 10 hours and at this point, I was passed out on the floor by the toilet with my mom on the phone. She said I needed to call 911 and go to the hospital, something that was foreign to me at the time. I gathered my strength to call 911, explain the situation and tell them where I was, and then I proceeded to pass out again, only to wake up in the hospital a few hours later.
Fast forward a bit, I was diagnosed with chronic Gastroparesis and I have also been diagnosed with Intracranial Hypertension. I am one of the lucky ones as I have been able to build a career and my managers have always been generally understanding of my special requirements (aka long bathroom breaks at times). I now work for a software company in Manhattan and live with my husband and two cats.
On the surface, my life looks pretty good, and it really is quite good, but there is so much that people do not see or realize about me and what it took to get where I am.
There have been countless days I have pushed through my work day and as soon as it ends, I have gone right to the ER to spend the night. The following morning I am back in my office and while I look tired, no one realizes where I spent the night before.
I have to make sure I get 8 hours of sleep a night to be functional, so this means I often miss out on social activities that are normal for a 24 year old. My husband suffers from this as well when he has to cancel to take care of me.
It’s extremely difficult and I wouldn’t wish what I go through on anyone, but I know there are a lot of us in the same boat. I have a few key pieces of advice for anyone with chronic illness that is trying to still have a career/ social life, etc. Of course, please keep in mind there are varying levels of these illnesses and sometimes it is impossible to do what I list below. I am highly functional now, but there was a time when the way I live my life now would not have been possible.