The Stigma of Having a Disease

There is a stigma that comes with having a disease, Lupus is no different. Swelling is a symptom that I refer to in these posts because it offers a visual. It was easy for people to see when I was sick if my legs or face were swollen but many times there was no swelling. Not all diseases or Lupus flares have a visual, which unfortunately leads to judgement, verbal abuse, negativity, and stereotypes.

The stigma that surrounded my Lupus was a difficult emotional journey, but it made me a stronger person. It also made me more empathetic to others with disease or disability. This story is not to invoke sympathy or point blame at anyone, rather it is to let others fighting a similar battle know that it does happen, they are not alone, and it does get better.

The key to avoiding any stigma is information and the spreading of that information. There was little to no information about Lupus when I was diagnosed so some people made their own assumptions which led to some unpleasant comments. For instance, I used to honestly describe my aches, pains, or whatever plagued me at that moment when asked how I felt. However, the most common response was, “you look good.” It was a rare occasion that someone acknowledged the fact that I was hurting or going through something invisible to their eye. I tried to stay positive, keep up my appearance and remain physically fit despite the storm inside my body. However, it may have given off a sense of well-being. Eventually, to avoid the scenario, I learned to just say, “I’m fine.”

I used to dismiss my own suffering with the thought that there is always someone suffering with something worse. I should be thankful to only have Lupus, right? Well, it wasn’t until recently that someone pointed out to me that I have a right to feel bad regardless of what another person is going through. I allowed people dismiss my suffering because of this flawed thought process. Yes, I am thankful not to have something worse but that does not mean that what I am going through is any less important to me. My dentist has known that I have Lupus since we met in 2016 (ish). One day, I was telling her that my Lupus was unstable and that I had been taking Prednisone which is important if having work done because it lowers the immune system making me susceptible to infection. Her response was, “well, at least you have access to medical care.” She explained that she knew someone who had Lupus but had no access to medical care. I truly felt empathy for that person. However, it wasn’t until later that I realized that my Lupus flare had been dismissed due to another’s suffering. A comparison to another person’s suffering should never be a response when someone says they are suffering. She totally missed the importance of what I was saying, which was the need to be premedicated with anti-biotics before the procedure.

We moved many times during my husband’s military career which came with a new set of doctors. There were only two moves where doctors did not retest me for Lupus. One doctor stated there was no way I had Lupus and that I had been misdiagnosed. Of course, months of testing proved him wrong though he never apologized for the poor bedside manner. My appearance and positive attitude affected the way my Lupus was perceived by doctors and others. Shouldn’t my words and medical records speak louder than my first physical appearance? I encountered similar issues with gynecologists regarding endometriosis.  

There was a time in my life when I was on disability for Lupus (and other issues). This came with much scrutiny and negativity. Living with it was hard enough, but having to defend my every move was emotionally taxing. I often heard the phrase, “it must be nice to sit at home and not work.” Well, no! No, it was not nice to sit at home. In fact, it was very stressful not being able to contribute to my household and I felt useless. When I was able, I volunteered for the Army or church to fill my time but that did not help monetarily. I taught myself create many things to stay busy and sometimes sold them at craft shows but it was not a career. I often found myself explaining to people why I couldn’t work but, why did I feel the need to defend my disability? The questions were inappropriate and should not have been asked. What they didn’t know was that I already felt like a burden to my husband, my family, and to society. Lupus and disability were not part of my plan, and I had no control over what was happening to me. I couldn’t control what others thought nor could I change their minds regarding my disability status but, I could control how I treated other people. So, I continued to be the best person I knew how, continued volunteering and helping people whenever possible. I couldn’t expect people to understand, especially since it was all so new to me too.

Disability was not easy to achieve and was started by the recommendation of my physician. Although, I still had to prove that I had Lupus and its severity (among other things). The process took two years and included a barrage of tests from various doctors and psychoanalysis (as if I could fake lab tests, really?). It would have given me great joy to learn my doctors were wrong. However, the results proved otherwise. On the day of the disability hearing, the lawyer speaking on my behalf read the long list of ailments and handed the file to the judge. The State representative handed over their results as well, which the judge perused for a few (very long) minutes. Afterwards, the judge looked at me then gave a deeply heartfelt apology on behalf of the State. It was a bittersweet victory because I didn’t want to be sick nor disabled.

Stigma often occurred upon meeting others who know someone else with Lupus (or endometriosis). There was often a comparison of my Lupus versus that of their friend, acquaintance, or loved one which usually didn’t bother me at all. However, some comparisons took a negative tone like, “well, my friend (or whomever) doesn’t have that” then “are you sure it’s Lupus?” This type of comment was basically stating that I could not possibly have Lupus because the friend doesn’t have the same symptoms. Other times, the person would ask how I was doing but dismiss my response because the “friend” didn’t have the same issue. Why ask the question if not willing to hear the answer or have any empathy to my issue.  Not that I needed empathy, but they could have acknowledged my statement and perhaps engaged in a decent conversation. Usually, I would explain how Lupus affects people differently and the various forms of Lupus. However, it became easier for me emotionally to eliminate Lupus from most conversations.

Believe it or not but, one of my bosses told me that I “got” Lupus because I was a terrible person. There are religions that say those who suffer, suffer because they (or man in general) have sinned. This was said to me when I was 20 years old just after learning that working was no longer in my future. There was nothing I could say to change that person’s thought process but, the comment made quitting my job much easier than anticipated.

There are people who think Lupus is something you catch like a virus or a cold. I often heard the question, “how did you get Lupus?” Many people ask because they or someone they know have symptoms which they attribute to Lupus. They often ask me to describe my symptoms before and after diagnosis. While I was always more than happy to share my story, I did not want to mislead anyone into thinking they could or could not have Lupus. My feet often swelled for no reason but that does not mean someone with swollen feet has Lupus. My blood count was extremely low but that doesn’t mean someone with a low blood count has Lupus and so on.

On the contrary, some people think it is a genetic disorder. Lupus is not something that can be passed down through genetics. Lupus is an “acquired” autoimmune disorder. However, DNA may play a part in how Lupus affects an individual. For instance, my grandmother had arthritis, so Lupus is more likely to manifest with arthritic symptoms because of that grandmother’s DNA. These types of predispositions are what contribute to a person’s Lupus, but they are not the cause of the Lupus.

Others have confused the Lupus Anticoagulant as having Lupus, but it is not related to Systemic Lupus nor is it an anticoagulant. It is an antibody that the body produces. The Lupus Anticoagulant can be found in people with many other disorders but has never been used to diagnose Lupus nor is it a cause of acquiring Lupus. Although, I do carry the Lupus Anticoagulant which complicates my Lupus. The only time a person can “get” Lupus is through transfusions, though it would be rare in today’s medicine since pre-screening processes have improved.

The last stigma of having a disease the unpredictability of a flare (or issue). There have been times where I have been dressed and ready to go but got sick just minutes before leaving. Other times, I have been ill after arriving at a destination. Lupus often joins the party causing me to miss out, have a hard time, or end the event early. Explaining to people that I am unwell is not always understood or taken as an unwillingness to be there. I was always willing to try to be there for everyone but, Lupus made it difficult to be successful at it.

The stigma of having a disease comes in many forms from insensitive comments, inappropriate comparisons and misunderstood information. Over the years, I have learned how to better handle myself in these situations or avoid them altogether. Lupus is a terminal disease so; I choose to be kind and be the best person I can for as long as I can.