Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology.
Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a challenge. She believes there is a lack of resources in higher education to support students with chronic illnesses.
Still, this hasn’t stopped her from taking control of her health. Below, Cyrena shares how she’s tracked her mood on PatientsLikeMe for over seven years, and how she prepares for every doctor visit to make sure all her questions get answered.
What gives you the greatest joy and puts a smile on your face?
Probably a full 24 hours with no obligations other than to play with my two cats, eat whatever I want, and hang out with my partner all day.
What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
The greatest obstacle that I have faced living with chronic illness has been getting through graduate school successfully (and in one piece!) I believe that making higher education, particularly graduate and professional education, more supportive of students with chronic illness would require that institutions recognize that chronically ill students are willing and capable of completing a challenging degree. Completion, however, requires that colleges and universities be able to provide appropriate medical and psychological support, and if they are unable to do so directly, facilitate access to these resources through disability support offices. Most importantly, chronically ill students need to KNOW that these resources exist and that people around them are confident that they will be able to succeed.
How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
Waking up everyday and not knowing what that day will feel like. Today I may be able to roll right out of bed and get on with my day, even though it feels like I’m swimming through a vat of molasses. Two weeks from now it could take me four hours to get out of bed, take a shower, and go back to bed again because I simply am too depressed to face the day. But no matter what’s happening, more often than not no one else can see what’s going on. That’s every day living with invisible illnesses.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
Become an expert! No one knows more about you than YOU do. But also learn as much about your illness(es) that you can, so that when you communicate with your physicians and other healthcare providers, you have a better chance of understanding what is going on before you leave the office.
How important has it been to you to find other people with your condition who understand what you’re going through?
It has actually been more important to me to find people living with other chronic illnesses than finding people with my specific illnesses. I find that within particular illness communities there is a tendency to fall into a cycle of comparison — both positive and negative — rather than support. In meeting people with other chronic illnesses, I have been able to share general survival tips and identify ways in which the chronic illness experience can be improved for all members of society.
Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.
I believe that I advocate for myself whenever I have an interaction with my physicians. I come in with a specific set of questions and concerns and make sure that the appointment doesn’t end until we have at least talked about them. Short of emergency situations, I don’t believe that anything involving my health is a unilateral decision. And I make sure to get copies of anything I ask for, even if they grumble about it.
How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
It was PatientsLikeMe that introduced me to the concept of tracking my moods online, then other health parameters like medications and quality of life. I now have over seven years of Mood Map data online. It gives me the opportunity to go back through my history and compare external and internal factors between past and current mood events. When I first started using PatientsLikeMe, I was a more active member of the community forums, and found it immensely helpful when I needed somewhere to turn with the aches and pains of everyday life with illness.
What is your favorite type of pet?
Cats, hands down. A cat is introverted and sometimes standoffish, but (s)he’ll be your best friend if you put in a little effort.
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I agree with the comments above. Being involved with your children is a rare aspect of AA men. Stay strong and involved with your kids. That8#&217;s the best legacy you can pass on.