(Some names have been changed for privacy purposes)
Aynalem, an epilepsy patient for more than 7 years, was baking Injera that unfortunate day when she was overtaken by a seizure and fell on the hot plate. She had suffered the burn on her face that always remembers her defencelessness to the disease. Aynalem graduated in Information Technology (IT) with Diploma. Whenever she applied for vacancies, “what happened to your face?” is the first question thrown by the wondering employers. Most of the employers rejected hiring her as an office worker and she was obliged to spend more than 9 years without work.
In 2015, Aynalem was hired at a company as an IT expert. However she didn’t stay long and left the job because of the poor salary, 2 thousand birr, not adequate enough even for transportation fares from her workplace to home.
“Due to the misunderstanding of individuals and the society, almost all epilepsy patients suffer from discrimination or inferiority attitudes,” Aynalem tells Addis Zeybe.
In another instance, Almaz is a mother of an 8 years old boy with epilepsy. She has no one to look after her son when she has to move or go to work. Almaz is the only responsible person for her son.
“I’m marginalized from social affairs such as ‘Edir’ and other forms of local gatherings as a result of my son’s epilepsy,” says Almaz
Currently, Aynalem and Almaz along with her son have joined an epilepsy patient support group. The patient support group has now given mental relief for the two women.
Patient support groups are commonly defined as, a group of people with common experiences and concerns who provide emotional and moral support for one another.
“Patient support groups are structured to raise awareness, simplify patient’s medical process, fundraising, relieve the feelings of loneliness and share experience with people facing similar challenges, mainly health issues, among patients and their families,” says Haymanot Altaseb, Specialist Nurse at Care epilepsy Ethiopia.
“Patient support groups are comforting, especially for illnesses in which the society is less aware. Strengthening such patient groups would help to break out wrong perceptions. Epilepsy patients who were pushed out from social activities and services mainly schools are now allowed to learn like others, this is the result of the efforts by organized patient support groups.”
“Patient support groups are about creating a better future,” commends Haymanot.
Since joining the epilepsy patient support group, Aynalem and her colleagues built the “we can!” spirit. They say that the group’s benefits are beyond medical care.
During Addis Zeybe’s visit to the epilepsy patient support group, patients and their parents were working on handcrafts that would be marketed later.
Aynalem who is currently attending her Bachelor's degree study through a distance education program says, “Though it’s hard to be here after a long journey of education, it sounds better to spend time with people who understand our situation”
Support groups are organized for various causes while patient support groups focus on patients. Most of the time, patient support groups on cancer, epilepsy, albinos, HIV, psychological trauma, and physical disabilities.
Kassech Fanta was shocked when the doctor told her she has breast cancer. During her medical follow-ups, a nurse recommended her to join the Pink Lotus breast cancer patient support group, one of the rare kinds of support groups in Ethiopia.
"The social awareness regarding cancer is too low, most of the time people feel and whisper cancer as a way to death," says Kasech.
Pink Lotus patient support group manages to create a social awareness that cancer is like any other illness that can be cured with medical and expert follow-up. Most patients drain into hopelessness when they learn to have breast cancer. However, many others including Kassech got relief and were eager to see tomorrow since joining a support group.
Anyone with severe health or mental problems, even with no problems, needs to be encouraged to join patient support groups as they provide information on how to prevent illnesses before they happen and to recover from pains and trauma henceforth.
“The patient support group gave us back our joyful lives,” wonders Kassech.
Haymanot Altaseb, the specialist nurse, highlighted that the patient support groups created a room for the patients to dream and to have role models who have emerged out of similar pains and discriminations courageously.
The importance of patient support groups happens to be very significant in countries like Ethiopia, with several underlying abstract healthcare problems. An evident experience shows that such groups have brought about remarkable social impacts in countries like Germany, UK and US are mostly experienced active patient support groups.
Kassech dreams to see the Pink Lotus support group having more members and emulate the ‘support group’ scheme to other forms of works and challenges.
“Patient support groups differ from other forms of supportive actions because they are managed, patient-centered, focused on specific purposes and goals,” says Haymanot.
Experts define ‘patient support groups’ activities as, “building a sense of responsibility, carefulness, and understanding within a community and individuals”.
Haymanot urges governmental and non-governmental bodies to pay due attention to strengthening such groups’ activity, as they are helpful in alleviating problems, especially those abandoned by social responsibilities.
“I wish to see stronger support groups established wherever necessary, mainly patient-centered gatherings.”
Pink Lotus breast cancer and Care epilepsy patient support groups would be ideal experiences for that can be furthered in our society, even though they need attention from every stakeholder and concerned citizen.