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.

The Value of Human Experience

While listening to people who live with chronic physical illness, one may occasionally hear the following, "I have diabetes" or "I have RSD" or "I have MS" or "I have lupus." However much more often one is likely to hear, "I have this horrible pain" or "I just feel tired all the time" or "it is a tremendous effort to just get out of bed and take a shower."

When people speak about chronic physical illness, they are usually detailing their phenomenological experience...what it is like for them to live with whatever illness they may have. Those descriptions of what they live through are incredibly meaningful...just as important as the diagnosis itself and at times perhaps even more. A diagnosis can inform a doctor of what to do, what to prescribe, and what the course of the illness is likely to be. Yes this is very important. The diagnosis also legitimizes a person's occasional difficulty engaging in certain activities or going to work. However sometimes the diagnosis, the label, which is simply a label that identifies a cluster of symptoms, overshadows the experience of what these symptoms are like for a person. This can be dangerous.

It is very easy to say, "well there is no cause for my experience so it must be psychosomatic...the end." Well...firstly, just because a physical cause for a set of symptoms has not been found does not mean that one does not exist, and second, even if it is psychosomatic that does not negate that a person is actually experiencing a set of physical symptoms that to them are certainly real.

People may become very frustrated with their experience of having symptoms when there is no way of knowing why these symptoms exist. Sometimes people in this situation begin to blame themselves for "creating the symptoms in their minds", or become depressed because they feel helpless to treat or alleviate their symptoms, or become embarrassed of their experience and push through their suffering in an attempt to hide their pain from others. It is sad that saying, "I feel extremely sick today" is not attributed as much meaning as "I have X illness and I feel extremely sick today."

If we take a moment to really reflect on what is important, it will become apparent that perhaps people's experiences are even more legitimate than the labels that are placed on them. After all, the experience is a direct picture of what it is like to be that person, while the diagnosis--the label--is created by people and placed on other people's experiences in an effort to have a quick way of identifying a cluster of symptoms that a number of people may have. BUT EVEN ONE PERSON'S UNIQUE EXPERIENCE IS MEANINGFUL AND IMPORTANT!!!

For years, many people living with lupus were unable to receive answers for why they experienced such a variable range of symptoms. Even today it is an incredibly difficult illness to diagnose, particularly because there are so many different symptoms and because the course of the illness can be so different in various people. Even today, some people live for years EXPERIENCING symptoms without having a diagnosis. Who knows what new labels may be creating in the future. Regardless of having a diagnosis or not, remember the importance of the experience! So a doctor may say, "I don't know what it is," ok, try another doctor. If a number of doctors say it is psychosomatic, explore that with a mental health professional. A non-diagnosis does not mean that there is no hope for change. What will lead to change is for each individual to discover. Will it be herbal remedies, psychotherapy, meditation, yoga, life changes...? The only way to know is to keep on living, keep on trying, and to never de-legitimize the value and significance of the human experience...your human experience.