By Maya Brown-Zimmerman
A few months ago, I wrote a post about the process of getting diagnosed with an “Invisible Illness” and how it can be difficult to get doctors on board. This month, I decided to look at how our illnesses can affect our relationships with those around us.
I was diagnosed with Marfan syndrome as a child, and it was my mother who pushed for my diagnosis. She recognized that my tall, thin stature and inability to master some gross motor skills — like riding a bike — were not typical of children my age. Thus, when I did receive the diagnosis of Marfan syndrome, she and my father took it very seriously (and were sometimes a little too overprotective!).
Growing up, I’ve received mixed reactions to my diagnosis from others around me. Some friends have been intensely supportive: carrying heavy loads for me, slowing their pace if we were taking a walk, and even participating in Marfan awareness events with me. Other times, I’ve been heckled for having too many doctors’ appointments or not participating in activities, as though I was making everything up. My diagnosis strained some relationships, but by and large, it has reached the point where it’s really not a big deal in terms of my family and friends; they don’t question the validity of my symptoms anymore.
I decided to pose the question on Facebook: “For those of you with an invisible illness, how did your family/friends react during the diagnostic process? Did they believe you? Were they supportive? How about now?”
Although I heard from people with a variety of diagnoses, there were common themes within their responses. They include:
- Family or friends saying “If you just did _____ then this would go away” and/or “It’s all in your head.”
- Suspicions or accusations of laziness, hypochondria, and exaggeration in order to get out of work or get attention (even if they accept your diagnosis as valid)
- People saying/assuming that because you “don’t look sick” you must feel just fine.
Overall, a fair number of people reported that it was difficult for some of their loved ones to understand what was going on with them, especially in cases where a diagnosis was difficult to confirm. Denial was really common among family members and friends, and in some cases that denial has continued for years. A few did share how supportive and proactive their family and friends were, and have continued to be, though they still reported occasional feelings of loneliness and isolation during the diagnostic process.
Also, who else thinks it’s interesting that although no one can see our illnesses on the outside, it is often the diagnosis of such an illness that shows us the truth about our relationships with others oh-so-clearly?
I think that this demonstrates just how important a support network of people who have been in your shoes is, not only during the journey for a diagnosis, but also after. How did your loved ones handle your diagnosis of an invisible illness? If they handled it negatively, how have you coped?
Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.