The Difficulty in Diagnosing Lupus

Lupus might seem straightforward enough. It has a defined set of symptoms, and with 16,000 new cases per year, it’s not exactly uncommon (Understanding, 2015). Nonetheless, it is not a clear-cut disease. In fact, just getting a diagnosis is often the result of a lengthy, frustrating process of elimination. Here’s why:

• Many refer to lupus as “The Great Imitator.” Its symptoms are identical to a host of other illnesses including fibromyalgia, Lyme disease, thyroid disorders, and more.
• Lupus has many different possible symptoms. As a result, different people experience the disease in different ways.
• Lupus can spontaneously worsen or improve. When symptoms become more subtle, it can be even more difficult for physicians to see them.
• The most significant indicator of lupus is the butterfly rash. Not all patients will experience this symptom (Diagnosing, 2015).

The Lupus Life

Getting a lupus diagnosis is bittersweet. Getting a diagnosis means you finally have a name for the beast that is burdening you. In the same breath, it marks the beginning of a lifelong struggle. There is no cure for lupus – only daily medications. There will be times of unfathomable exhaustion, and times of remission. Some lupus patients experience very few complications, while others will completely succumb to the disease. Lupus is a very personal journey that belongs to those who experience it.

Healthcare Limitations

Lupus is a struggle from diagnosis to daily life. But the difficulties, unfortunately, do not end there. “Lupus is debilitating and destructive and can be fatal, yet research on lupus remains underfunded relative to diseases of similar scope and devastation” (Entertainer and Television, 2014). The American healthcare system, it seems, still has a lot of work to do in the fight against the disease.

After a Diagnosis of Lupus

When you first learn that you have lupus, it can be an emotional time. You may feel conflicted, overwhelmed, or angry. It may be a sad or confusing time for you, and you might even feel every emotion at once. Sometimes, people wonder, “What am I supposed to do now?”

Thankfully, you have options. Lupus does not have to be a life sentence of constant misery. With a few helpful hints, you can feel a little more in control of your disease:

• Connect: Form close relationships with doctors, friends, and family who fully support your lupus journey. Find doctors you can trust. Explore social media and online message boards. Avoid those who minimize, judge, and condescend. Those who choose not to respect your illness are toxic.
• Comply: Follow your doctor’s orders as best you can. Keep up with appointments, medications, and restrictions. Try using calendars, pill organizers, or pill timers. Do not follow anyone else’s advice without first asking your physician.
• Treat Your Body Right: Eat healthy foods and take care of yourself. Listen to your body. Exercise as tolerated. If you need to rest, then rest. Always protect yourself from sunlight (Systemic, 2013).
• Eliminate the Negativity: You cannot make your lupus work around your life. Your life must work around your lupus. Your lifestyle will be unique, and some people may not accept that. They may criticize you simply because you don’t live by their standards. Avoid the negativity at all costs.
• Educate: Learn as much as you can about your illness. Stay abreast of the latest studies, treatments, and breakthroughs. Spread awareness often.

Moving Forward

The fight against lupus must continue. You must be your own advocate every single day. You deserve to give yourself the healthiest life you can. Your body is fighting against you, and it’s time to fight back. This is your lupus journey, and now, you’ll never walk alone. CrowdMed is here to support you – one step at a time.

Lupus Related Resources

Entertainer and Television Personality Nick Cannon Grand Marshals Walk to End Lupus Now in LA. (2014, Augus 07). Retrieved from http://www.lupus.org/general-news/entry/nick-cannon-grand-marshals-walk-to-end-lupus-now-in-LA

Diagnosing Lupus. (2015). Retrieved from http://www.lupus.org/answers/entry/common-symptoms-of-lupus

Diagnosing Lupus. (2015). Retrieved from http://www.lupus.org/answers/entry/diagnosing-lupus

“Systemic Lupus Erythematosus (Lupus).” American College of Rheumatology. N.p., n.d. Web. 26 Mar 2015. <https://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/lupus.asp>.

Understanding Lupus. (2015). Retrieved from http://www.lupus.org/answers/entry/what-is-lupus