Coping With a Lack of Lupus Understanding

When Friends and Family Just Don’t Get It

Coping with a Lack of Lupus UnderstandingLupus SLE can be a tricky disease because it is, by its very nature, both an imitator and invisible. You likely don’t tell people every time you’re in pain (as that would probably be all you’d talk about) and therefore people don’t really know how much lupus impacts your daily life.

SLE is also extremely fickle, meaning that you may feel like you’re on death’s door one day and then feel absolutely fine the next. Because of the nature of the illness, it can create lots of tension between you and your family and friends, especially if people are unable to understand.

The Rocky Road to Diagnosis

For me, I had the worst time with people understanding my illness before I was diagnosed. Like many lupus patients, it took me several years to get a diagnosis. During this time, I was told I had several different health issues, including depression, vitamin deficiency and chronic fatigue syndrome (CFS).

The latter, although a real disease, is still controversial in the medical community and the name doesn’t lend itself to a very believable cadence. As I developed the disease in college, many people told me they were tired as well and I should get on with it.

One of my old college roommates was also kind enough to tell me the her father, who was a doctor, didn’t believe in CFS and therefore I was probably just using the label to both get sympathy and get out of my obligations.


All of the doubt from others made me start to doubt myself, something I struggle with to this day. Sometimes I would convince myself I was going crazy and was actually just faking and trying to get sympathy, and would then push myself to the limit to try and “overcome” whatever was making me feel physically ill. If I just pushed myself, I said, I would be able to overcome what was making me so sick.

During this time, I also had a boyfriend leave me because he thought I was being lazy. Because he valued physical activity, he said he felt my periods of inactivity were bringing him down. Due to this, I began to convince myself that I would never find someone who would accept all of me.

This was reinforced by family members who would tell me to downplay or hide my illness from potential partners. It actually took me several years of soul-searching, therapy, ruining the next serious relationship I was in because I was terrified of losing him and even trying to cope by starving myself before I was finally able to accept that I was lovable even with lupus.

More Doubts Post-Diagnosis

After receiving a diagnosis, things have seemed to calm down as far as people not believing me. Last year, however, I did end up having a very hurtful fight with a close family member who thought I was using the disease as an excuse to get out of seeing her because I secretly disliked her.

This person is one of the most important people in the world to me, and having them accuse me of this made it feel like I had nowhere to turn and had no one on my side. This person had been there and seen the first-hand effects the disease has had on me and my life since day one, so these feelings took me by surprise and really hurt me.

Next page: helping people understand.

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