Let Me Show (Lupus)

About Lupus:

Systemic lupus Erythematosus (SLE), also often called “Lupus”, is a non-contagious autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue. “Lupus” is Latin for “wolf” and gives the name to the disease as one of its symptoms – erosive facial lesions – in the old days were reminiscent of a wolf’s bite. There is no clear understanding why it occurs, there is no cure – just means to alleviate symptoms. Lupus is much more prevalent in women – roughly 9 out of 10 patients are female, and the diagnosis usually comes between ages of 15 and 45, more often in 20’s.

Every patient is different in terms of which exact symptoms and how many of them are present and to which extent they make their presence felt. The most common symptoms are extreme fatigue, joint pains, skin rashes, sun sensitivity, migraines, cognitive dysfunction, but there are many others. Lupus is often confused with other conditions, including rheumatoid arthritis, depression, and Lyme disease, because their symptoms are so similar. And this is why many of the patients encounter lack of understanding and empathy. They are often being thought of as lazy hypochondriacs and are being misunderstood when they have to cancel appointments and meetings with friends due to the sudden fatigue symptoms. Many patients are tired of trying to explain that what they go through is not an ordinary illness and that their extreme fatigue, which is the most common symptom, is not the kind that can be cured by having extra sleep.

Initial Research Process and Findings:

I learned about Lupus from a friend of mine in Copenhagen who is a research doctor in the subject. She described many possible symptoms and life consequences of Lupus and I felt that there must be something I can help with as a designer. So, this project started with no other problem in sight but Lupus itself, in general.

I was fortunate to get connected to the Copenhagen community of Lupus patients and found more people with the condition through my friends circle - although this is considered a rare disease, I suddenly did not feel so at all.
My initial research round included 7 interviews with patients and 2 more with medical staff. At some point in the project, I also ran a questionnaire with around 30 responses from patients.

The research learnings highlighted several important topics, some of which are:

• lack of appropriate exercising
• the importance of patients communities and one's hesitation to join it
• the importance of scheduling of everyday activities to allow for enough rest
• diminishing friends circle
• lack of patient's acceptance of the condition, especially from young people
• lack of understanding or even complete misunderstanding of the condition and its consequences by those around the patient

The Opportunity:

It is the topic of lack of understanding and proper support from family and friends that I decided to design for. I heard about it from every single patient I spoke with. Those diagnosed long time ago told me that at some point they got tired of trying to explain to others what Lupus is. So they seldom try it anymore. Newly diagnosed patients, after they overcome the shock and learn to understand themselves what Lupus is, are often scared and troubled by the perspective to explain to others something they cannot even find words for. One of the biggest symptoms they have to deal with and explain to others is sudden and inexpressible fatigue which to an outsider may seem just like depression or, worse, laziness or hypochondria.

This issue of inexplicability also seem to lead to many other social issues, and helping to solve it may positively affect patient's life in many other ways than just keeping friends and family informed about the disease.

Design Process:

With the help of other students in the IDP program, I was able to come up with many possible solutions - some quite provocative, while others more simple and direct. These solutions inspired me with the idea to create a tangible artifact that can be co-made by the patient and the friend and would convey patient's individual story. They key was to only assist the patient in telling the story himself or herself.

Along came prototype number one - a puzzle that is contained in the picture of individual. The storyboard comes apart into several pieces, our of which and an artifact in form of a butterfly, one of the symbols of Lupus, can be built. This butterfly will contain pieces of individual's story on both sides of its wings. Several patients whom I showed this prototype to liked the idea. Yet the general consensus was that it has its limitations and is harder to use when speaking with someone who already doesn't take your condition seriously.

Prototype two was a digital version of the assistant. It was presented as a phone app and allowed its user to choose what aspect of life with Lupus to explain. To assist with the explanation, it provided stories which included pictures and, optionally, text. The decision to use a phone as the channel came from the fact that it is always with the patient and can be relied on when answering a variety of questions a listener may have.

The feedback was that although using such tool is easier when dealing with different characters in the audience, the cartoon aspect is still drawing the seriousness of the topic away.

The final prototype thus included a fully designed phone and tablet app which allowed its user to supply their own content, be it drawn pictures or photographs.