Not Lucky to Have and Illness but Lucky to Have a Diagnosis...What?!?

Living with a chronic physical illness is living with uncertainty (when will the symptoms strike, will I remain stable, how will this impact my life goals?). One thing that is certain is that a diagnosis has been named that can change one's life forever. What if the diagnosis was also uncertain? What does one grasp on to?

Not all chronic illnesses are easy to diagnose. Many people suffer with debilitating symptoms for years before doctors are able to provide them with any answers. For example, people may be struggling with an autoimmune disease for six, seven, even ten years without anyone being able to identify the disease or provide appropriate treatment for it. It is easy to imagine how devastating it is to receive a diagnosis of any chronic illness, but harder to think about how lucky one is to pinpoint what the problem is early on.

One big red butterfly rash on the face and immediately one is clued into Lupus as the culprit. A big rash--its not exactly the most pleasant thing, but now it is known and medication and treatment can begin in hopes of preventing additional tissue damage. What if that rash never came? Maybe a diagnosis could be made with history, blood work, clinical symptoms...maybe not. Besides the damage that could be occurring in the body, imagine the uncertainty of not knowing what is happening in one's own body. "Why is my body doing these things? Why am I in pain? Why am I so tired? Why did my legs stop working? What will happen to me? Am I going to die?" The answer is "nobody knows." How terrifying is that?

Living with a chronic physical illness is a tremendous challenge regardless of whether or not there is a diagnosis. It is not fair, it is at times uncontrollable, and it is suffering. It takes enormous strength to adapt and to continue to live well. Staying positive can be a challenge. So it might sound insensitive or odd to say that one is lucky to have a diagnosis. One is NOT lucky to have an illness but to be able to name what that illness is opens the door for answers, for treatment, for health, and for understanding. To be ill and to not know why or what it is is even more frightening.

It is easy for people..all people, chronic illness or not, ...to get stuck in their own heads, their own worlds, their own suffering and to feel like there is nothing else going on in the world. This can become isolating and counterproductive. Never down play your own journey, your own strife, or your own pain. Share your experience and do not allow yourself to be alone. Hear the suffering of others. Let them share and feel that they are not alone either. Be careful not to forget the things that you are lucky to have, that could have been worse, and that are worse for others.