Meninggalkan Keluarga Karena Stigma terhadap Kusta
Penulis : Mansyur
“Sekali lagi, Kusta bukan penyakit kutukan, bukan penyakit keturunan. Itu anggapan yang salah sebenarnya selama ini!”
Mentari belum tinggi sepenggalah, saya melangkahkan kaki menelusuri jalanan berpaving block dan terlihat bersih dari sampah untuk berkunjung ke rumah salah seorang penyintas Kusta, Alimuddin (54), di kompleks Jongaya, Jl.Dangko, Kelurahan Balang Baru, Kecamatan Tamalate, Makassar.
Hari itu adalah akhir pekan (16/6/2019), kali pertama saya datang di kompleks Jongaya. Menurut Al Qadri, selaku pegiat Perhimpunan Mandiri Kusta (Permata), kampung ini dihuni sekitar 608 kepala keluarga, kurang lebih 2.300 jiwa, dan terbagi menjadi 9 RT. Terdapat 451 orang penyintas kusta.
Jongaya bukan sekadar kompleks biasa. Pemukiman ini memiliki sepak terjang sejak zaman penjajahan Belanda hingga kini.
Tepat bersampingan dengan kantor Permata, di teras rumah kami dipersilahkan duduk, di hadapan meja yang sering digunakan untuk mengurus berkas dan melayani warga. Maklum, Alimuddin merupakan sekretaris RW 04, Kelurahan Balang Baru.
Sekilas terlihat tak ada tanda-tanda bahwa Alimuddin pernah terpapar kusta, tetapi setelah mulai mengobrol dengan lepas, bapak dari empat orang anak itu mulai membuka diri, berkisah bagaimana ketika Mycobacterium Leprae menyerang kulit, saraf tepi, jaringan, dan organ tubuhnya.
Semasa masih di bangku Sekolah Dasar (SD) kelas 3, ia mengaku telah terkena gejala kusta, muncul bercak serupa panu. Hingga menjelang naik kelas 5 SD, barulah kemudian ada pemeriksaan ke Puskesmas. Alimuddin terdiagnosis kusta, padahal tidak ada satupun keluarganya yang pernah mengalami hal serupa.
“Mula-mula itu saya kena gejala-gejala kusta waktu kelas 3 SD. Muncul bercak putih kemerahan di kulit dan mati rasa. Nanti kelas 5 SD, baru ada pemeriksaan di Puskesmas. Saya diperiksa, hasilnya dicek di lab rumah sakit umum, ternyata saya terkena kusta,” ujar Alimuddin.
Kusta dan Stigma yang Melekat
Kusta atau Lepra juga lebih dikenal Morbus Hansen, merupakan penyakit infeksi yang disebabkan oleh bakteri Mycobacterium leprae. Bakteri ini menyerang kulit, saraf perifer, saluran pernapasan atas, dan mata.
Meskipun tergolong ke dalam penyakit menular, bakteri penyakit kusta tidak mudah menular begitu saja. Hal ini diungkap oleh dr. Udeng Damang dari Yayasan Netherlands Leprosy Relief (NLR).
“Berdasarkan hasil penelitian, dari 100 orang yang terpapar kusta, 95 orang kebal terhadap penyakit tersebut. Hanya lima orang yang bisa sakit, dan itupun tiga diantarnya sembuh dengan sendirinya. Terkecuali kekebalan tubuhnya lemah dan lambat ditangani ketika ada gejala kusta,” ungkapnya.
Udeng Damang menambahkan, penularan kusta memerlukan kontak erat secara terus-menerus dan dalam waktu yang lama dengan pengidap kusta.
Menurut data kesehatan global, Indonesia berada di posisi ketiga dengan pengidap kusta terbanyak di dunia, setelah India dan Brazil. Di Indonesia, berdasarkan data Kementerian Kesehatan (Kemenkes), tercatat 11 provinsi belum mencapai angka eliminasi kusta.
Berdasarkan Pusat Data dan Informasi Kemenkes, angka kasus kusta di Indonesia terus menurun, meski relatif lambat dan tak signifikan. Pada 2017, angka prevalensi kusta di Indonesia sebesar 6,08 kasus per 100 ribu penduduk dengan jumlah 15.920 kasus.
Khusus di Sulawesi Selatan (Sulsel) mengalami penurunan yang signifikan, berdasarkan data pasien kusta dari Dinas Kesehatan Provinsi Sulsel.
“Kondisi kusta di Sulsel hingga akhir 2018 sebanyak 1,18 persen dari jumlah penduduk Sulsel, yang sebelumnya adalah lebih 9 persen,” ungkap dr.Ernawati.
Penyakit kusta sebenarnya dapat disembuhkan tanpa cacat bila penderita ditemukan dan diobati secara cepat dan teratur. Namun kenyataannya, penyakit kusta seringkali ditemukan terlambat dan sudah dalam keadaan cacat yang terlihat.
Pada dasarnya, terdapat 2 tingkatan kecacatan pengidap kusta saat ditemukan, yaitu tingkat I dan II. Kecacatan tingkat I adalah cacat yang belum terlihat atau belum ada perubahan pada anatomi tubuhnya. Sementara kecacatan tingkat II adalah sudah terjadi perubahan yang tampak pada anatomi pengidap kusta.
Alimuddin berkisah bagaimana kondisi dan respons masyarakat terhadapnya ketika tahu bahwa dirinya terjangkit kusta.
“Dulu saya sering sembunyi karena malu. Namun, akhirnya keluarga dan orang-orang tahu saya kusta, biar mau lewat depan rumah untuk ambil air itu tidak ada mau,” tutur Alimuddin.
Kecacatan yang tampak pada tubuh pengidap kusta sebagai reaksi karena tidak segera mendapat penanganan, itu seringkali menyeramkan bagi sebagian besar masyarakat, sehingga menyebabkan perasaan jijik, bahkan ada yang ketakutan secara berlebihan terhadap kusta. Hal itu dinamakan Leprophobia.
Dengan raut wajah yang tampak pilu karena mengenang masa-masa kelam dalam hidup, Alimuddin terus mnceritakan bagaimana stigma yang melekat kuat pada pengidap kusta di daerah asalnya, Bone, Sulsel.
Pada tahun 1979 Alimuddin menerangkan sudah muncul reaksi akibat kusta.
“Saya selesai SD, saat itu mulai ada reaksi. Tangan sudah bengkak, telinga panjang dan semua bercak-bercak. Kasarnya dibilang sudah kayak monster,” terangnya sambil memperagakan.
Dirinya mengaku telah berupaya berobat secara non medis dan membeli ramuan herbal dengan biaya dari hasil menjual seekor kambing, tetapi hasilnya adalah nihil.
“Penyakit kusta kalau bugis Bone bilang itu cola’, kalau orang Makassar bilang kandala‘,” katanya.
Kusta dianggap oleh masyarakat kala itu sebagai penyakit keturunan dan kutukan. Ketika dalam suatu keluarga ada yang terpapar kusta, maka tidak akan ada yang sudi berkeluarga atau menikahi sanak seorang penyintas kusta.
“Cukup saya saja yang sakit, janganmi ikut keluarga tersiksa,” ujar Alimuddin dalam bahasa bugis Bone dengan mata berkaca-kaca.
Stigma buruk itu pula yang membuatnya dengan berat hati pergi meninggalkan kampung halaman dan orang tua yang dicintainya tanpa kabar. Harga diri keluarga turut jadi alasan bagi Alimuddin untuk hengkang.
“Saya tidak tahu mana barat, mana timur. Saya turun di terminal Panakukang waktu itu, bermalam di situ. Dengan uang, kalau tidak salah Rp1.500 ataukah Rp15.000. Tidak ada saya kasi tahu orang tua, saya pergi buang diri,” peluhnya
Hingga pada akhirnya, Alimuddin ketahui tentang kompleks Jongaya. Sejak tahun 1980, ia bermukim di sana. Berobat secara intensif dan melakukan terapi sendiri agar kondisinya bisa pulih sepenuhnya seperti saat ini. Namun meski sudah sembuh dari kusta, nyatanya masih saja ada perlakuan diskriminatif didapati.
“Dulu itu taksi, pete-pete [Angkot] tidak mau ambil penumpang di sini [Jongaya] ke Sentral. Termasuk ojek online, tidak ada yang mau angkut. Takut masuk di sini. Disebut saja Jl. Dangko tidak mau mengantar masuk sini,” ungkap Alimuddin.
Barulah pada tahun 2007 ke atas itu berubah keadaan karena menurutnya, Permata sudah sering memberikan penyuluhan atau soisalisasi terkait apa itu penyakit kusta.
Di sisi lain, kata Alimuddin dahulu ketika orang masuk di Jongaya, maka mereka akan memakai masker atau menunjukan gestur seakan jijik.
Saat memasuki pemukiman yang kurang lebih keseluruhan seluas 7 hektare ini, kita akan disambut dengan gapura bertuliskan “Kompleks Penderita Kusta Jongaya”, hal ini dinilai afirmatif dengan stigma buruk terhadap penyintas kusta. Di sana tidak ada perbedaan signifikan dengan pemukiman lain, di mana masyarakatnya hidup dengan berbaur satu sama lain.
Alimuddin berharap agar nama perkampungan Jongaya bisa ada perubahan, agar tidak ada lagi stigma yang muncul.
“Kita usahakan untuk bagaimana bisa merubah nama kompleks ini. Tetap ada nama, contoh bisa dengan ‘Permata’, Perumahan Mantan Kusta atau kompleks Jongaya,” terangnya penuh harap.
Kini Alimuddin telah berkeluarga dan dikaruniai empat anak. Dengan kerja serabutan, ia menafkahi keluarga. Mulai dari berprofesi jadi penarik becak dan dibantu oleh istrinya berjualan kue di sekitar kompleks. Ia mengaku pernah pulang ke kampung halaman untuk sekedar meretas kerinduan setelah 20 tahun kepergiannya. Seketika keluarga yang dulunya Leprophobia, kaget akan kehadirannya.
“Jadi waktu saya pulang, keluarga heran karena dikira saya sudah meninggal dunia,” ujarnya.
Diakhir pertemuan kami, Alimuddin menegaskan mengenai penyakit kusta yang selama ini dilihat oleh sebagian masyarakat sebagai kutukan adalah amat keliru. Kusta adalah penyakit dan dapat disembuhkan. Saat ini pemerintah menyediakan obat kusta secara gratis, sehingga yang dibutuhkan pasien terpapar gejala kusta, hanyalah rutin menjalani pengobatan.
“Sekali lagi, Kusta bukan penyakit kutukan, bukan penyakit keturunan. Itu anggapan yang salah sebenarnya selama ini,” tutur Alimuddin dengan lugas.
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Tulisan ini pertama kali diterbitkan pada 21 Juni 2019 dengan judul “Meninggalkan Keluarga Karena Stigma”. Kami melakukan penyuntingan ulang dan menerbitkannya pada rubrik Akademia (Kesehatan) untuk menyambut Hari Kusta Sedunia atau World Leprosy Day yang diperingati tiap Minggu terakhir Januari agar masyarakat mengenali lebih jauh mengenai penyakit ini.
Editor : Chung
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