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Diagnosis can take a very long time for some people because lupus is so complex and imitates so many other possible diseases. Over time, some people can become so frustrated by the absence of a diagnosis while enduring pain, fatigue and many other symptoms that naming the disease comes as a relief.
For most people, however, receiving a “systemic lupus erythematosus” diagnosis is a difficult experience. This may be the first time that they have heard the name of this disease and the variety of symptoms that they might face explained. This difficulty is aggravated by the chronic aspect of the disease, the bad reputation of some of the treatment components, and the unhelpful tone of social media. Yet, there is no other option for them than to start their journey of living with lupus.
The majority will first face a period of “denial”: why me? What did I do wrong? It is not possible that I have this disease, are you sure that it is not something else? For some, this will be a period of anger and depression. Once they have accepted this reality, they often will move to the “awakening” phase, during which they start build an understanding of the disease and its treatment, often focused on the limitations and threats caused by lupus. For most, over time, the understanding of the disease will become more complete and more balanced. This is the “adhesion” stage. They accept that lupus is in their life, that this is not their “fault”, and focus on minimising its impact, creating routines to help fight it or deal with its effects. Finally, several patients reach the “eudemonic” stage, where lupus becomes an integral and “positive” part of their life.
There is no fixed time for experiencing these psychological stages. Positive social support, patient education, participation in discussions with others living with lupus, open dialog with the physician or the lupus team, and sometimes psychological support, can help people to move, each at their own pace, through the various psychological stages of living with lupus. There might be relapses, moments of hopelessness and frustration about the disease, this is also normal and happens to most people living with a chronic condition. Flares can create a temporary return to a previous psychological stage, but the experience of being engaged in the management of the disease remains an asset to live better with the reality.
Living with lupus is a journey, where patients progress through different psychological stages over time, at their own pace
Education, dialogue with experts and social support are useful to building a better life with lupus.