I've Stayed Ill
Image: Unsplash
Discussion of disease, the reality of living with it, is absent, at best, in South Asian homes and in our context. There tends to be hushed pity and glancing eyes; there is encouragement not to speak of illness as if to do so would invite it into our homes. Under all of this, there is the suggestion that people who are ill, particularly chronically ill and or disabled, will struggle to live a fulfilling life or may not be able to do so at all.
I considered these aspects of our culture when I sat down with Nila, a woman with ulcerative colitis (UC). UC is an autoimmune disorder in which one's immune system attacks the colon, the large intestine, and rectum, ultimately leading to severe inflammation and painful ulcers, which cause bleeding and mucus and pus secretion. As with many autoimmune disorders, the diagnosis of UC happens in response to a jarring, often traumatic, flare-up in which people experience a variety of painful symptoms for the first time. Even in today's miraculous age of modern medicine, diagnoses of autoimmune disorders can take months or even years as symptoms for many autoimmune disorders, especially UC, overlap with a plethora of other conditions. Following a diagnosis, patients are subjected to a trial-and-error process of finding the immunosuppressant that works, which can take months in and of itself. In the meantime, the patient in question suffers through their painful, often life-threatening symptoms. In Nila's case, as is common among people with UC, this meant stomach pains, frequent, painful bowel movements, and bleeding, including blood loss so severe she fainted on more than one occasion. Treatment with the appropriate immunosuppressant is not the easy cure for autoimmune disorders. There is, in fact, no cure, only living with it. Flare-ups are almost inevitable for most people, especially as the immune system becomes accustomed to and can overcome the drugs suppressing it. In these cases, doses are increased, and new drugs are tried. There are tiers to immunosuppression – it starts with steroids and maxes out with biologically active drugs. If nothing works, the only option left, save for internally bleeding out, is to cut out the body parts the immune system is attacking. Immunosuppression presents a heavy toll on the body that leaves it even more vulnerable to death and disease, as this pandemic has made dreadfully clear. Nila has not had a flare-up since she was first diagnosed with UC at fourteen but is already on a biologically active immunosuppressant. A future in which her colon is removed and replaced with an external colostomy bag that collects the digestive tract's waste is entirely possible.
A diagnosis of an autoimmune disorder, especially UC, is a harrowing experience. The weight of it being a chronic illness, of all expectations of one's life-shifting, of illness becoming fundamentally part of one's life, is a heavy one. Nila remembers receiving her diagnosis and asking if there was a cure. She remembers her doctor saying, "No, but let me explain," and blanking entirely after. I asked her how her perception of her body has changed since her diagnosis and she described having "an angry relationship" with her body. The nature of having an autoimmune disorder led her to question why her immune system was fighting her; the seeming randomness of UC, as no one else in her family has it, left her angry with the world. "My body did fail me," she said, "it has failed me." Nila says that nowadays, she is usually okay with her condition now however, the onset of the pandemic, the extra social restrictions she needed to take and her fear of COVID-19, left her furious again.
Outside of her changed perception of her body, Nila's initial reaction to receiving a diagnosis was intertwined heavily with the impact this would have on her family. Nila is the first child in her family, of whom another member has a disability. The manner in which she carried herself in the first half of her life, as the self-reliant, independent, responsible firstborn, became impossible when her debilitating symptoms began. The onset of her symptoms followed only months after her family immigrated to Canada; it came when her family was struggling to find their footing as new immigrants. Nila worried about "hurting everyone around [her] and being a burden to [her] parents." She felt that, due to her other family member being disabled, she needed to not be a trouble-making child but with her illness she was no longer the easy child. These feelings truly emerged when she was hospitalized for the first time and she became reliant on other's help and care. Now that she is in remission, she feels pressure to take care of herself to ensure that she doesn't "get to the point" where she has to be dependent on others once more. The fact that she will have to be reliant on others again if she has a flare-up both discomforts and troubles her.
As a Tamil woman, Nila also became aware of how her illness made her less marketable as a bride. Her own family had not impressed this upon her, she assured me. She was simply familiar with how aunties spoke among themselves about women; she understood that there would be a second list of "faults" assigned for all of her societally appealing qualities. Nila worried that having UC would be added to that list and that she would have a more difficult experience securing a good husband. While we were discussing having UC in this context, Nila also made mention of the added shame that comes with having an inflammatory bowel disease – a "bathroom disease," as some people have hurtfully labelled it as. She understood that the association of blood, diarrhea and bloody diarrhea with UC made it a gross and discomfiting topic for many people; it concerned her, in turn, to be perceived as gross or dirty in return. Consequently, Nila confides her condition to only a few friends whom she feels she can trust.
Nila is very used to and prefers to manage her life and illness independently, even when it would be easier to take the help of others. Every six weeks, she goes to infusion appointments during which her body is pumped with her biologically active immunosuppressant; oftentimes, she goes alone. As Nila said, "My infusions are personal; it's a vulnerable time for me. I don't like looking like a patient and I don't want to be pitied." At the end of high school, she brought one person, a close friend at the time who is also Tamil, to one of her appointments. This person sympathized with Nila's condition and was very adamant about wanting to support her and accompany her to infusion. Feeling close enough to this person, Nila invited her to come to an appointment. At this appointment, as it happens sometimes, Nila began bleeding heavily while she was being hooked up to the IV; she began spurting blood and it took some time for everything to settle and for the infusion to begin. After the appointment, Nila recalled apologizing to her friend for having to see her bleeding like that. Her friend said it was fine and that they "didn't realize how serious [Nila's] condition was." This person proceeded to say that Nila would "have a hard time finding a mappillai" and that it would be necessary for Nila to warn potential partners ahead of time.
At the time, Nila tells me, she agreed with her friend. "It was something I've always known," she said. The reality of this pressure and fear hadn't set in a few years later when she began taking an interest in someone. She felt worried about telling this person she was talking to, worried he would think it was gross, and felt rushed with the prospect of needing to tell him; it was then that she realized how much this experience with her friend influenced her. Simultaneously, Nila felt a responsibility to tell this man. She felt that if she did not, she would be "hiding something." "I felt like I was leading him on if I didn't say anything," she said. "I didn't want to date and not tell him only for it to come out later and for him to say that I wouldn't have dated you if I knew before." As well, she wanted to "make sure for [herself] that [she would] get someone who could handle it," and that his reaction was a kind, empathetic one as she, naturally, did not want to be with someone who was not.
Nila's current partner is someone she was initially friends with, and, just as the pandemic began, they became closer. When lockdown happened, Nila explained that she was afraid of the pandemic because she was immunocompromised but did not elaborate, to which her partner was kind and understanding. Soon after restrictions lifted, Nila and her partner planned to finally have their first date and Nila felt the pressures to tell him then that she had UC – to effectively "warn him" ahead of time. Nila describes the moment she told her partner about her condition as a moment of drama with an anticlimactic end. Towards the end of the date, the two walked in a park, circling for a seat before sitting down on a log. There was silence until she said, in a very stop-and-go way, that she has UC and explained what that entails. Her partner, entirely unphased, simply said, "Okay." Nila asked if he cared and if it was a problem, to which her partner said, "No, I'm worried about you. Are you okay?"
Outside of concerns about her ability to have a partner or marry someone, Nila also considered how UC would impact her sex life. One of the more heavily impacted areas of Nila's colon is her rectum; consequently, her anus is fairly scarred. She had concerns that sexual partners would be turned off by this and weirded out by the fact that she's had bloody diarrhea. She also worried that her sexual partners would be angry that she isn't able to have anal sex as it would be extremely painful for her. As many women do, she felt an expectation to be ready and able to comply with anything her partners would want to do. When Nila and her partner began engaging in sex, she asked him not to look at her anus and was hesitant to be in positions or in lighting that would make her scarring obvious. She also apologized for "not being able to give" her partner anal sex to, which her partner did not care about; he wanted Nila to be comfortable and enjoy herself above anything else.
At the end of the interview, I asked Nila about her future and how she thinks UC will affect it. Nila discussed being concerned that she will have a flare-up again that will force her to have her colon removed and have a colostomy bag put into place. In terms of her sex life, Nila is worried that a colostomy bag will change things. She understands it's not a pretty thing, this bag that collects her wastes hanging outside of her body, and that it's not a normalized thing as it never appears in media and definitely not porn. Nila also mentioned that certain positions that would put pressure on the colostomy bag would become impossible, given the risk that it would burst. Moments that it will burst are also bound to happen. It will not be easy or pleasant and yet she will have to be prepared for when it happens. Nila also discussed not "want[ing] to be a burden,", especially to her loved ones; she is concerned about if and when she will rely on others again. There is also a risk that Nila's children will be diagnosed with an inflammatory bowel disease which may potentially prevent her from having children at all. Thankfully, her partner is a kind, loving person and is determined to be there for Nila as much as she needs. His steadfastness is, obviously, a comfort, one that brings her joy and that she highly grateful for.
I loathe to think that Nila should be considered lucky for her partner's reaction or willingness to help take care of her in the future. I want to believe that, especially in a collectivist community like our own, sympathy and kindness are easily found and those of us who are chronically ill do not have to worry or wonder if their bodies will be accepted and loved. I am afraid, however, that Nila is lucky, that this is not a reality that many South Asians with chronic illnesses live in.
