In the past few years, there has been a lot of research on the emotional health of young adults with T1*. Most of these findings report higher levels of psychiatric distress: translation, those with T1 are showing high levels of depression, anxiety and general psychological distress. There is also a correlation data between a higher level of psychological stress and higher A1C reports (although, at this point, it is not clear which is the casual factor)2. This is problematic for anyone with T1, but is especially threatening for young adults, as the majority of young adults are leaving home, finishing up college, and creating a new life (that generally goes through periods of instability as we try to figure out jobs, relationships and living on our own). So what’s the backstory of this emotional upset?
Mr. Patrick Totty, contributing editor at Diabetes Health, wrote an article recently called The Agony of Type 1 Hope, discussing from a T2 perspective what seemed to be a great frustration for those with T1: the possibility of a cure3. In this article, he discusses the frustration, anger and anguish that he has seen in comments posted on articles about emerging research by those with T1. And to me, this makes sense. T1 is not an easy disease to live with; it’s a consideration throughout each day, it’s everyday, and there are no days “off”. It’s a constant. And for many, it can be a constant struggle. Thinking back to something Eugenie Coleman said during her interview (see previous post), we are substituting mathematical calculations for an organ that was perfectly made to help our endocrine system… and is now unable to do so. So, there are going to be days that things go wrong, and no matter how hard we feel we are trying, T1 in that moment feels like an enigma- a nonsensical beast that is raking over our body, causing physical, physiological and emotional discomfort. Understandably, the result will feel tremendous, and we may need to spend some time curled up in a ball, feeling the frustration, pain and confusion of coping with such a disease. And that’s okay—we need to let ourselves have those moments. And at the same time, we must also acknowledge that we have an opportunity to grow stronger as individuals, and that we have a unique opportunity to be closer to our bodies than most people are—when listening and working hard at controlling our blood sugars, we can also quickly identify when other things are going on.
The way that I have found to cope with the struggles I feel, is to live my life in the moment, dealing with the day to day issues of this disease, and trying to invest my hope and effort into dreams that I am in control of. I am not a cellular biologist, or a medical doctor, nor do I wish to be—a cure is therefore something that I would benefit from, but not something I will invest a lot of time or hope in. Rather, I will focus on what I am: I am an adventurer, interested in the world around me, and how other individuals and collective groups understand their world… so my hopes are stored in travel, pursuing education in anthropology and psychology, and having adventures. I find that dealing with obstacles that I can effect change over, such as obtaining supplies for Kenya, to be very gratifying to overcome, as they are directly helping me achieve a larger dream, and this contributes positively to my overall emotional health!
If following stories about research on a cure, investing time, hope or maybe even money into it, makes you feel better and helps you get through the day-to-day struggles of T1, then by all means, continue! If, on the other hand, investing your time and energy into keeping track of research and a possible cure is causing additional emotional strain, maybe consider investing yourself into a venue in which you have more control… this isn’t to say you should give up hoping, but by engaging with something that you have more control over, you will have the opportunity to feel more success, and potentially learn more from any missteps!
*Hislop, A. L., Fegan, P. G., Schlaeppi, M. J., Duck, M. & Yeap, B. B. (2008). Prevalence and associations of psychological distress in young adults with type 1 diabetes. Diabetic Medicine, 25: 91–96. doi: 10.1111/j.1464-5491.2007.02310.x
*Luyckx, K., Seiffge-Krenke, I., Schwartz, Seth J., Goossens, L., Weets, I., Hendrieckx, C., & Groven, C. (2008). Identity development, coping, and adjustment in emerging adults with a chronic illness: the Sample case of type 1 diabetes. Journal of Adolescent Health, 43(5), 451-458.
*Kakleas, K., Kandyla, B., Karayianni, C., & Karavanaki, K. (2009). Psychosocial problems in adolescents with type 1 diabetes mellitus. Diabetes & Metabolism, 35(5), 339-350.
*Type 1 Diabetes Complications – Type 1 Diabetes Health Information – NY Times Health. (2012, May 22). Health News – The New York Times. Retrieved August 15, 2013, from http://health.nytimes.com/health/guides/disease/type-1-diabetes/complications.html
2Northam, Elisabeth A., Lin, A., Finch, Sue, Werther, George A., & Cameron, Fergus J. (2010). Diabetes Care. Psychosocial well-being with functional outcomes in youth with type 1 diabetes 12 years after disease onset. Diabetes Care, 33(7): 1430-1437. Doi:10.2337/dc09-2232.
3Totty, P. (2013, August 9). The Agony of Type 1 Hope . Investigate, Inform, Inspire. Retrieved August 12, 2013, from http://diabeteshealth.com/read/2013/08/09/7954/the-agony-of-type-1-hope-/