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.
Marie’s Chronic Illness Survival Guide
● Learn how to say “No” confidently and unapologetically. You don’t have to say anything else and everyone just has to accept it. The more you say “No” the more comfortable you will become and the easier it will be to say it in situations you know are not good for you or your goals. Prioritize what is best for you to be healthy and happy. I promise this will also help you be a better friend, partner, daughter, son, etc.
● Create a living, working document where you outline your goals and steps to get there. Keep it high level. For example, “Get New Job in Marketing” can be your goal and then steps to get there can be “network with contacts already in marketing”, “edit resume”, “Get 8 hours a night of sleep so I have energy for the job search”, “Visit Primary Care Doctor and all specialists needed before I get a new job so I am ready upon beginning”, etc. Once you reach one goal, move onto the next. Don’t bite off more than you can chew, it’s not worth it or sustainable long term.
● This is the “Cover Your Butt” rule. At work, make sure your managers have an idea of what you are going through, as well as HR. This way, if you ever need to request work from home or if you disappear for an hour into the bathroom, or need to go home early, they know it is probably related to your illness and not just you going to interview somewhere else, for example. If you can help it, I recommend not bringing this up until after you have accepted the job and paperwork is signed and your probation period is over.
● Try to be as flexible and adaptable as possible since living with a chronic illness almost forces you to be. There will be cancellations, changes in diagnosis, etc., and it is important to be ready to adjust when these things come up. Developing Plan B and C in addition to Plan A is critical.
● Form a support network online or in person (ideally both). Find good people who will be there for you through thick and thin. Include a few people without chronic illnesses as well as long as they are supportive and understanding of your situation. It helps to have some “normalcy” in your life and connection to the world that others experience.
● REST when you need it! When your body tells you to rest, within reason, do it. I have a rule where I do not do anything social on weeknights so I can just come home, relax, and recharge. There are some weeks where I have to travel for work, so I need to take advantage of rest when I have it. My friends understand I will not be able to go out on a Wednesday night until 2am unless it is a very special occasion. See #1- get comfortable saying no to things that will be detrimental to you personally even if it is normal for your age.