Interview With a Lupus Advocate About Her Treatment Decisions
Members of our Editorial Team connected with "M," an advocate living with lupus who would rather stay anonymous for this interview. "M" wanted to share what it was like to be diagnosed with lupus despite some negative experiences with her doctors. Learn more about her diagnosis journey and the decisions she made with her doctor below.
Everything seemed to be going wrong
Q: What made you think something was going on with your health?
A: We all have those days…you know, the ones that knock you off your feet you’re so exhausted. Maybe you blame it on getting too little sleep the other night. Maybe you blame the on-going stress from work, kids…life! In any case, you know this is no longer normal. There are other symptoms too that you can’t seem to brush off any longer. Things that you didn’t think were connected but then, could they be? The red flush on my face was more pronounced and didn’t go away. The pain in my body and joints that I attributed to entering mid-life now made me question if there was more going on. Connective tissue injuries that wouldn’t heal due to chronic inflammation in my body. Everything seemed to be going wrong with my body, and yet doctors tell you it’s normal to feel this way as we age. Somehow, I knew this couldn’t be right.
My ANA test was positive, and then negative
Q: Many people living with lupus find it difficult to get a quick and accurate diagnosis. What was your experience?
A: The first rheumatologist I saw did some basic bloodwork for the obvious things, as to be expected. One of these tests is called an ANA test. It detects antinuclear antibodies (ANA) in your blood. Our immune systems normally make antibodies to help us in fighting infection. However, these antinuclear antibodies often attack our own bodies, and we have an autoimmune reaction.
A positive ANA test typically indicates that your immune system is attacking your own tissue. However, some people who have a positive ANA test are perfectly healthy. Confusing, right!? I thought so, and the confusion mounts from there as the doctor orders an Anti-dsDNA test since my ANA came back positive (my ANA test was negative several months later).
Q: What other tests were done?
A: The Anti-dsDNA test comes back off the charts high (280 IU/ml when it should be less than or equal to 99 IU/ml), yet my doctor doesn’t tell me what this means.
I had to become my own best advocate
Q: What did you do?
A: He tells me he can prescribe meds for my symptoms. I don’t oblige. I push him for answers. What do these tests mean? I get online and look up the tests myself, and then, I see it: lupus. A combination of fear and denial takes over. I think, ‘if the doctor really thought I had lupus, then he would have said something, right?’ So, I follow up and speak with the doctor about my findings and get nowhere! More confusion, more fear. It’s at this point I seek a second opinion. After all, how can I live my life not knowing if I’m living with a serious autoimmune disease? What comes next is unimaginable to me: more questions and more confusion.
Q: Can you share more about your research?
A: After reviewing my medical history, gathering data from tests and ordering new tests, there finally is an answer. Only, it’s not a black and white answer. The rheumatologist starts the process of explaining to me how different doctors will diagnose lupus differently according to who they studied under, as there are two paths that can be followed. One, which is a cut and dry model. You meet certain criteria, and you start lupus medications, and you are labeled a lupus patient (forever). The other line of thinking understands that there are many patients (sometimes termed pre-lupus) that meet the criteria for lupus but perhaps could go either way. This is all dependent on the strength given to each particular test/symptom/criterion. These patients must decide with their doctor what is their best course of treatment.
I had the option to wait on starting medication
Q: Tell me about your treatment decisions.
A: My doctor was well aware of my hesitation to go on long-term medication. I felt if it was only being used to ease my symptoms, and not addressing the root cause, I could try lifestyle changes first. He agreed. As a doctor, his role is to give me the best medical advice and yet, this doctor went a step further. He shared something no chronically ill patient wants to hear. He shared that if I labeled myself as “having lupus”, it could make it harder for me to get insurance down the road. As unfair as it is, he’s seen it happen to his patients. I felt fortunate in that I had the option to wait on starting medication which meant that I could wait on a formal lupus diagnosis. After all, there’s always the possibility that I will test completely negative next time!
Many patients do not have that luxury. They are fighting an autoimmune disease that is wreaking havoc on their bodies, and the medication must be the first line of defense. I salute those fellow warriors. It’s a daily battle. Most patients spend years looking for answers, and the diagnosis offers relief if only because there’s finally a name to it. Whether you opt to go on medication or determine (with your doctor) that you want to look at alternative options as a first step, have an open and honest dialogue with your medical provider about how this could potentially impact your eligibility with insurance down the road (life insurance, LTD, healthcare). We (as patients) must continue to ask the questions, do the research, look for answers. It is up to us how we manage our health and determine our path.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?