Updated: Sep 16
The complexities and extraordinarily exhausting process of following up with doctors has been taking most of my energy lately. Chronic illness diagnoses often take a vast amount of energy for very little information or definitive treatment. My first autoimmune specific blood work came back positive 6 years ago, although I had been symptomatic since childhood and was diagnosed early on with Raynaud's Phenomenon, a phenomenon that often accompanies autoimmunity. At the time doctors would debate if I had lupus or not, and labelled me among other things as a patient with undifferentiated connective tissue disease with the expectation that my blood work would most likely change to aligning with lupus.
Explaining my autoimmune diseases has always been a challenge. The simple answer used to be "I have lupus," as a rheumatologist said it was highly probable, and at that time I didn't have the depth of understanding I do now about the distinction between autoimmune conditions. I was more or less told that all autoimmune issues were symptoms of the same thing, and that the specific diagnosis didn't matter. Looking back that eerily echoes the years of doctors who told me that my endometriosis diagnosis didn't matter because the treatment wouldn't change.
Over the years I picked up diagnoses as my blood work became more and more unusual and less able to be stuck into one category. Sjogren's Syndrome, rheumatoid and psoriatic arthritis, and UCTD were all noted in my chart. As I am starting to pick up the pieces where they were left off two years ago prior to being forced to focus on gynecological disease, the experience of exploring autoimmunity has reminded me of how unclear most of the process of diagnosis is, and the path to treatment and building a whole body care plan for individual needs is a long and winding one.
My new rheumatologist has reviewed the blood panels we ran and we discussed results. My immune system is in a hyperactive state, more so than it was 2 years ago, or even 6 months ago. The only thing he has ruled out, for now, is lupus. He confirmed that I most likely have Sjogren's Syndrome with multiple system involvement paired with Rheumatoid Arthritis, which was already in my records as I have been hospitalized for SS before and have specific antibodies related to that disease.
In a way this is positive news, because I am highly allergic to the first drug reached for to treat lupus. I'm also allergic to a number of arthritis related drugs as well, however I have had some positive or neutral experiences with immune suppression based drugs in the past.
Of course this doesn't end here. I haven't received my diagnoses and immediately felt better for knowing. I have to undergo a complete neurology and cardiology workup to determine the level of involvement or inflammation in my nervous system, and ensure the irregular heart rates I've been experiencing aren't stemming from underlying heart disease. What would be causing the neurological sensations I experience is still speculation, though my rheumatologist has voiced concerns based on family history and the specific nature of my symptoms.
At current, I have a choice to try an immune suppressant to reduce my immune system response and see if that will improve some of my symptoms and prevent internal damage. Being in a pandemic with an already inefficient immune system makes this a difficult choice to make. Paired with an extensive allergy list, I am always wary of new medications as it seems to be a 50/50 chance if I will experience a reaction or not. As I will be undergoing more testing this month it seems logical to wait and reduce any chance of misguided results.
There is a culture of belief in America that health is cut and dry, or that there is a miracle drug, supplement, life style, or exercise that will effectively cure an individual. Part of my hopes in sharing my own story is to dispel this idea of immediate results. Each individual is different. Each expression of disease in a patient is different. Each person has different needs that must be met, and those needs are not always entirely clear. Despite these needs being met, it is not an overnight process to symptom relief.
I have also observed this belief that health is an achievement, that one works hard to will themselves back to health, that by pushing the body one can become healthy if they just try hard enough. Health is not an achievement. Being able bodied is a privilege, and it is a privilege that can be taken away by forces outside of one's control. This is a highly uncomfortable thought, but it is the truth. An individual can support themselves as well as they can, however there are uncontrollable factors that contribute extensively to well being.
When someone is looking for help with their health, it is a long process. There is no quick fix. Answers may not come for years, and the answers that come are often confusing and not well understood. It is a mental, physical, and financial burden to seek answers and improvement of life, whether it is through medicine, lifestyle changes, diet, exercise, acupuncture, supplements, or anything else. This burden is made heavier in a society that strips value from sick bodies and withholds support from individuals to favor the idea that the individual is responsible for all factors contributing to health.
Compassion for ourselves and others can work to dispel these ideas and cultivate a society that places value not on the ability of the body, but on the individual within the body.