I have 3 rare diseases that are unrelated to each other. I talk to a lot of people in online support groups with the same or similar issues. It’s sad because no matter what the disease, everyone is dealing with the same social problem. Judgement from others because they “don’t look sick.” What does that even mean? Many diseases do not have any outward visible manifestations. A lot of the diseases people are dealing with in these support groups include chronic pain, devastating fatigue, and cognitive issues. Only a mother can “see it in your eyes” that you don’t feel well. Other than that, none of these symptoms provide a visual for the people around us. The only way we have been able to communicate our symptoms is to tell people about them. And sometimes, our symptoms are at such a constant, that if we were to be communicating them to others whenever they occur, we would be “complaining” all the time. Therefore, what others usually hear is only the tip of the iceberg, yet somehow we are still considered “hypochondriacs.” And it has crossed my mind, to be the devil’s advocate, maybe this is their defense mechanism. Maybe they don’t want to believe that it really is possible for someone to be dealing with something so terrible. But I really don’t want to sit here and waste my time making excuses for the people who refuse to put themselves in others’ shoes. The other issue with vocalizing your symptoms is people who do not have a chronic illness tend to compare their own symptoms with yours. If I tell someone I have a headache, since I have Chiari Malformation, a healthy person has obviously never experienced the caliber of headache this produces. They compare it to their own everyday headaches, which can easily be relieved with over-the-counter painkillers and are “no big deal.” The same thing goes with fatigue. “Oh you’re tired? have some coffee.” Gee, I wish it was that easy. The sad thing is, there are doctors who behave this way. It’s really unnerving to visit a doctor who does not take the severity of your symptoms seriously. Then you start to worry, “Well should I even shower or brush my hair before I go see the doctor? If I look even remotely hygenic, I don’t know if the doctor will believe me.”
As if dealing with health issues isn’t stressful enough on its own. People suck.