Autoimmune Disease - Dealing with the Diagnosis

There are so many different autoimmune diseases, and many varying degrees to which symptoms show up (or don't), each person who is diagnosed will face a different situation and course of action.

Based on my experience with close family members who have been diagnosed with autoimmune disease, however, there are some common aspects to receiving such a diagnosis.

People are often diagnosed after they seek medical help for symptoms. Much of the time people aren't thinking in terms of a chronic medical condition when they have those symptoms. Often, they're assuming that their symptoms are related to a single, localized, problem or treatable infection. When it becomes clear that an autoimmune disease is suspected the individual's thoughts can turn from being generally hopeful that their symptoms could be cured to an ominous sense of a situation that ranges from sobering to frightening.

If the disease is one with which most people are at least somewhat familiar, the individual facing it (and his close family members) may conjur up worst-case images of what that particular disease does to some people. It is natural to want to learn as much as possible about the disease, as well as all possible treatments and prognoses.

Trying to find signs of reassurance or reason to feel hopeful is also something people do. Reasoning out that their symptoms appear to be mild or that there is the chance their particular disease will not progress (or progress too quickly) can offer some hope that the diagnosis may not be as gloomy as it first seemed.

Of course, again, some autoimmune diseases are more devastating than others, so reactions and emotional processing involved can be very different, depending on which disease a person faces.

Even with those diseases with which a person can often live with relatively few symptoms much of the time, there is a "loss of innocence" of sorts; because yesterday there was no cloud hanging over, but today there is the need to adjust to having a cloud looming for the rest of one's life.

The first time a person (or his close family member) hears the word that describes the disease, and for a period following that, that word can seem to be ever present in one's mind and can feel like one has been kicked in the head. With that ever present word can are the inevitable thoughts, which can, themselves, change from imagining the best case scenario all the way to the worst.

Depending on the disease, there can be a need to consider some of the possible needs and realities one will face if the diseases progresses quickly. Considering some of the relatively minor realities in the event the symptoms remain limited can also be part of the processing.

Grief, anxiety, and depression are all things that are often experienced. Anxiety can often die down once a person is accustomed to the idea of having the the disease, but there can be plenty of reason (such as signs that symptoms have worsened) for anxiety to flare up again. As with all grief, the grief associated with being diagnosed is something that can be processed in time.

Human nature is such that once we've processed the loss of the disease-free life we once enjoyed, we can emerge from the grief, accustomed to the idea of living with a chronic medical condition. People who have been diagnosed with an autoimmune disease must find a way to realize they're still the "same them" they've always been; but, too, there are realities about ways in which they will also be different from their pre-symptoms self.

There are also concerns about side effects of treatments, conditions such as stress or poor diet, and general management of the disease and/or symptoms.

My mother was in her fifties when a painful lump on her wrist made her see the doctor. She was diagnosed with rheumatoid arthritis. She (and we, her family members) knew that it was not possible to know how serious her condition would be, or how soon it would progress. We had known a woman in her thirties, who had been diagnosed at three years old. This woman showed few signs of the disease and generally lived a normal life. On the other hand, I had known someone who was completely crippled by the disease and who had turned to alcohol for the pain.

Over the twenty-plus years of the remainder of my mother's life her condition did worsen; but, while I don't underestimate her struggle with pain, she remained active and reasonably able to manage her symptoms for most of those twenty-plus years. Because she later developed diabetes I have no way to know if the heart attack that eventually led to her passing was caused by that, by years of living on powerful anti-arthritis medication, or by something else entirely unrelated.

A more overwhelming experience I had with autoimmune disease began the day before my son's third birthday. I was expecting his little sister, and my husband had not been feeling well for a few days. Suddenly that day, his feet developed extreme swelling. His previous symptoms had seemed like a possible cold or flu, but he was in pain when the swelling suddenly occurred.

After the doctor discussed the possibility of both cancer and an autoimmune disease, Sarcoidosis, my husband was referred to a series of specialists, to be seen over the following days. On his visit that day a good sized nodule was detected on his lung, as were some other matters for concern. The doctor did say he was leaning toward the diagnosis of Sarcoidosis, and he gave my husband a run-down on some of potential developments. This was a condition that can affect the body in a number of ways.

My husband didn't know what to think, and neither did I. That night, though, as I began to think more about what could happen, I found myself crying and crying in the bathroom for hours. My husband was already having a lot of symptoms that affected different parts of his body. All I could think of was, "Will he still be here for our son's next birthday? Will he ever really get to know the baby? At least our eldest son is eight - but eight is such a little boy too."

After spending the wee hours of the night crying to the point of exhaustion, I realized that daylight was dawning. Exhausted, and facing my three-year-old's birthday and the party that was hours away, I decided that I would not mourn my husband's situation unless and until the time to mourn arose.

Feeling absolutely beaten up, and with the probably diagnosis flying around my head, I went through the birthday party. The following weeks and months would involve my husband's having all kinds of tests and different medications. Our daughter was born six weeks after her brother's third birthday.

My husband's symptoms subsided to some degree, and tests showed that he was apparently relatively stable; but, to one degree or another, his medical condition has been something with which he has lived since then. He has had his times when he has undergone testing of one sort or another, and he has had times when he has enjoyed only minor symptoms. In general, he is someone who has lived with a number of health problems, although he has lived a normal life.

My then three-year-old "BIrthday Boy" is now 26. The baby I was expecting is now 23. Their brother is 32. My children's father's hair is turning gray. I have often thought how I lost my 62-year-old father to a sudden heart attack when I was just 21 years old and my brother was a teenager. My children have now had their father, with his autoimmune disease, longer than I had mine.

His diagnosis was a frightening thing, and over the years there have been times when scares have flared up and died down after a while. We learned that only time, sometimes, reveals the degree to which some autoimmune diseases will affect a person's life. We've learned, too, that after people become accustomed to having some conditions there is often nothing left to do but put them in the back of one's mind, keep on living, and deal with any crises that arise when and if they arise.

An autoimmune disease can eventually become as much a part of a person's life as his hair color or eye color. The diagnosis of an autoimmune disease takes some adjusting on the part of the person with it, as well as his family members. It involves some grieving, and it brings into people's lives a cloud that never really leaves. Still, clouds often have breaks in them, and when they do the sun shines through as brightly as ever before - sometimes for far longer stretches of time than sufferers and their families would ever have imagined.