It is one thing to hear the facts – quite another to connect to someone through a shared experience. Hearing lupus stories, from people who have firsthand knowledge of the disease, eases frustration and sorrow and brings together those who would otherwise feel isolated and misunderstood.
There is a significant amount of research connecting stories, storytelling and healing. Psychotherapy, in particular, looks at mental health counseling as a way of re-shaping the way a person views himself and his life, examining his own story and changing it. Stories of lupus help lupus patients examine emotions, form new, healthier life strategies and focus on aspirations and positive goals.
Additionally, though lupus is a little different for every person who has it, lupus patient stories all share some basic elements: they describe physical and cognitive (thought) difficulties caused by the disease, but also the stress, frustration and anxiety of coping with these difficulties. Hints for living with lupus, stories of overcoming obstacles with clever solutions, can help everyone with the disease to better manage with work, home life and social activities.
Positive stories of lupus also ease emotional pain. As much as 60% of people with a chronic illness experience some form of depression; they are no longer interested in activities they used to enjoy, they have low moods that last for weeks at a time, they suffer low self-esteem, persistent feelings of guilt or regret and may consider suicide. Mood disorders like depression are generally treated with a medication and psychotherapy, but patients are also advised to seek the support of caring friends and relatives.
Stories Of People With Lupus
Friends can be found in many places. Organizations like the Lupus Foundation of America and the SLE Lupus Foundation have local chapters all over the United States; volunteering is a great way to meet new friends, and help support the search for a cure at the same time. Doctors can often recommend a local support group as well, a place to go for advice and encouragement.
Perhaps the easiest way to meet others with lupus is to look online. There are many, many great stories out there – stories of living with lupus, stories from those who remember the pain of their initial lupus diagnosis, stories that speak of overcoming lupus, success stories.
The storytellers are from all walks of life, and have all forms of lupus. They talk about medication and side effects, about joint pain, difficulty breathing, lupus fog. They describe the debilitating fatigue and weakness from anemia, the constant attempts to explain the disease to those who can sympathize, but not understand.
They also say how far they’ve come, what they’ve achieved. Finished a degree, married and started a family, competed in an athletic event, launched an online business, nurtured an artistic talent. The true benefit to lupus stories is the clear evidence of the resilience of the human spirit, and the determination to overcome adversity.
The same sites that post stories of people with lupus ask for more stories that can encourage others and offer hope. Perhaps that is the most effective kind of healing through story: becoming a storyteller, with a triumphant tale to tell.
