Please Don't Shame Me for the Way My Chronic Illnesses Developed

I am 21 years old. I live on a college campus, go to classes, have a part-time job and social life. At surface level, I am a pretty average young adult. But what people usually don’t take the time to see are the invisible battles I fight through every day to maintain my lifestyle.

I am among millions of those who live with dysautonomia, specifically POTS (postural orthostatic tachycardia syndrome). POTS is characterized as a form of “intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing.” It is also a very different experience for every person with this syndrome; for me it mostly causes my blood pressure to drop, pulse to increase, blood pooling in my lower legs and feet, lightheadedness and syncope. This accompanies my fight with heart arrhythmia, chronic IBS and GERD. There is no cure for these conditions, but I manage them through medications and professional medical guidance.

Dealing with these invisible conditions is much easier to handle when I connect with others who have dealt with similar experiences. The chronic illness communities I am a part of here with The Mighty and on other forums are beyond kind, compassionate and understanding. I am honored to be a spoonie and share my story and experiences, as well as learn from others. Unlike many in the chronic illness community however, I was not born with my conditions. There may have been dormant factors that predisposed me to them, but it was a critical point in my life that triggered their impact on me.

For me, this point was when I was 18 years old, having been diagnosed with an eating disorder. Luckily I am in a better place mentally now than when I received the diagnosis. My experience ranged from EDNOS (eating disorder not otherwise specified) to anorexia. As I have gone through my recovery process, my mind and body have fortunately been very resilient. But the damage done to my heart, gastrointestinal tract and nervous system is, to an extent, irreparable, and upon further inspection, spurred diagnoses like the ones mentioned earlier.

When I tell this story while interacting in the chronic illness community, though it is a generally inclusive space, I have also been met with resentment. I have been told that my “illnesses aren’t the same” because I “caused” them through my eating disorder actions. I have felt belittled and embarrassed in some cases by those who feel that in the competition of “who has it worse,” they have the worse experience because they were born with their illness. This is the opposite of the goal of these safe spaces.

I have no anger or ill feelings towards the people who have expressed this to me. Instead, I am more saddened by the lack of understanding in the community. It is almost as though I cannot wholly be a part of the eating disorder recovery community and chronic illness community, and I believe this is a result of the mental health stigma that still exists and impacts how we view others. The irony is, there is stigma experienced by both communities, and there are more similarities than differences between the individuals that are a part of either. Not all illnesses, physical or mental, can be recognized by seeing someone with it. Also, neither physical nor mental illnesses are a flaw or fault or defining trait of the person with them.

Developing an eating disorder was not a choice, but I did choose recovery, and the remaining effects of my diagnosis are a part of my life. People fighting unseen battles of any kind are heroic in their own ways; no one’s experience is the same. But keeping on in the face of adversity, especially internal adversity, is the bravest act anyone can do. With better education and non-judgmental acceptance, hopefully we can encourage communities to uplift and encourage each other instead of being yet another force that tears us down.

We only have so many spoons! We use enough just trying to live our lives – I strive to use mine to better myself and those around me, no matter what life throws my way. When we change “I” to “we”, illness becomes wellness.