The risks of not being truthful with ourselves and others regarding lupus

“If you don’t answer to anyone, you will start lying to yourself,” a financial consultant once explained to me. His wisdom, albeit a bit sharp in tone, transcended his focus on money management into my focus on health and disease management. 

In explaining how to see results in money management, he said a critical step is to establish relationships with people who will keep you transparent, honest, and accountable with your budget. Those people are probably not family, and they may not be people directly impacted by your financial decisions.

For each point he made about sustaining financial truthfulness, my thoughts connected them to health and lupus. Financial truthfulness = health truthfulness = lupus truthfulness. Financial accountability = health accountability = lupus accountability. Financial transparency = health transparency = lupus transparency.

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One thing that’s definite is how difficult it is for some, and nearly impossible for others, to live with lupus and not have it as a constant presence in your thoughts. 

Sometimes — usually at the worst times — lupus becomes salient and authoritarian, controlling every part of your life, with symptoms ranging from unrelenting fatigue or loss of mobility to debilitating pain or organ failure. With heightened activity and flares, lupus takes and takes and takes. When disease activity is lower, the fear and lingering expectation of a flare keep lupus present in our everyday consciousness. In short, systemic lupus erythematosus is always on our minds. So my thoughts about lupus were not out of place while listening to the financial expert.

The bluntness of “You will lie to yourself” echoed because it is a truth that we fall into when we believe we cannot tell others how our bodies are truly feeling. We tend to stay silent about the truth of lupus until a flare sends us to the hospital. It could be to avoid overwhelming our limited caregivers. It could be to avoid hearing “But you don’t look sick” and having to spew the laundry list of biological chaos your body is experiencing at the moment. It could be to avoid undergoing a litany of tests and receiving another diagnosis. It could be to avoid putting your life on hold or missing weeks of work. The reasons are numerous, and they are valid. 

But, like the risks of not being truthful about your finances, there are risks associated with not being truthful about lupus.

For one, not being truthful about what you are experiencing (especially during a flare) can dangerously delay critical medical care. Think about it: During a trip to the emergency room, you’re met with medical professionals who don’t specialize in lupus care, so their protocols are to stabilize you. For a lupus patient, stabilization may take much more time than a trip to the emergency room can offer. That alone is a reason to be transparent and genuine.

I know it isn’t easy, and it’s often a rule I break, so here’s a tip: That transparency can be in the form of a list of symptoms you’ve tracked at the start of a lingering flare that you can share more easily without conversation, without having to defend yourself, and without having to justify things. Who you share this truth with is important because they are there for you to check in and give them an update regularly. Their role is to hold you accountable to being proactive and staying committed to your health. If they are living with a chronic condition, then they reciprocate honesty and transparency. (In previous columns, I’ve called these people therapeutic allies and “rems,” for “remarkable friends.”) 

If you feel you cannot share your lupus truth in that moment, you will begin to lie to yourself, then underestimate what could turn into a life-threatening flare. Lying to yourself also makes you act like everything is under control when we know lupus is an unpredictable wolf and a great imitator. Lying is not worth the risk.

Functional health expert Mindy Pelz wrote, “When your health falls apart, you need just one person to believe in you and give you hope.” For us, that one person can be found within the rare disease community, whether they are living with lupus or one of the many conditions connected to lupus, like Sjögren’s disease, Graves’ disease, Hashimoto’s disease, pericarditis, or rheumatoid arthritis.

Find that one person. Tell the truth. Be transparent. Let them hold you accountable. Your life is worth it. 

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.