Undocumented, With Type 1 Diabetes, and in Limbo

-Craig Idlebrook/GluCraig

Like others with type 1 diabetes, Tigist* always carries diabetes supplies, including extra insulin and snacks to treat hypoglycemia. Unlike many with type 1 diabetes, however, she also always carries immigration papers and a doctor’s note chronicling her medical condition.

She is just one of the unknown number of undocumented immigrants with type 1 diabetes who live in a near constant state of anxiety of what might happen if they are detained by U.S. Immigration and Customs Enforcement (ICE). They navigate the daily challenges of life with type 1 diabetes, but with an added layer of uncertainty because of their immigration status.

Tigist has learned to prepare for the worst after living for years in limbo.

“Before all this, or even going through it up until a certain time, I would think positive, that it would work out,” she said. “Now, I’m the other way. I’m very paranoid, and I’m always looking for something bad to happen.”

There has been concern over care in detention for immigrants with diabetes or other chronic conditions in the past. In June 2018, for example, four civil rights groups released a report criticizing the health services immigrants received while detained. The coalition’s report found that there were more immigrant deaths in detention in fiscal year 2017 than in any year since 2009. Independent medical examiners determined that half of the deaths were preventable, the group alleges. Of the 12 deaths listed in 2017, two had diabetes.

In December 2017, the U.S. Department of Homeland Security Office of Inspector General (OIG) documented shortcomings in treatment and care for immigrants held in four of five detention centers examined. The report found, among other things, instances where medical care “may have been delayed and was not properly documented.” ICE accepted the report’s findings.

Finally, in June 2017, a human rights group alerted the press about a woman with type 1 diabetes who allegedly was receiving inadequate care at the T. Don Hutto Detention Center in Taylor, Texas. The woman eventually asked to be deported to El Salvador because she said she was afraid for her health while in detention. A judge granted her request.

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Each individual story of an undocumented immigrant caught in the U.S. immigration system is filled with twists and turns. For Tigist, this unpredictability included her diagnosis with type 1 diabetes shortly after she was denied a visa.

Originally from Ethiopia, Tigist had applied for asylum in the United States in 2004. In her application, she argued that she fears returning home because she had been part of a political advocacy group that lost favor with Ethiopia’s ruling party. In the last 20 years, members of this group have been detained by the government or have disappeared. Court documents describe how both Tigist and a family member were detained and harrassed by the Ethiopian government for their connection to the group, and an immigration judge ruled that she could not be deported to Ethiopia because of her risk of being detained and possibly tortured on her return home.

However, Tigist hasn’t been granted permanent legal status in the United States. In 2005, she married a U.S. citizen and attempted to withdraw her asylum application so she could apply for a visa. A U.S. prosecutor blocked this move a year later, saying that the political group with which she had been affiliated was considered a terrorist organization. (The government of Ethiopia, until recently, had designated the group a terrorist organization, but the United States’ designation for the group has been unclear.) She was ineligible to adjust her status and unable to withdraw her stalled asylum application.

“Everything went black and I just couldn’t think,” she said.

Tigist began to appeal the ruling. Around the same time, she started to notice she was continually thirsty and lacked energy. She attributed the symptoms to the hot summer. Although she was a nurse and she had a close friend with type 1 diabetes, she ignored the telltale symptoms. Eventually, her husband convinced her to go to the emergency room. She was diagnosed with type 1 diabetes with extremely high blood glucose levels at the time of diagnosis.

Tigist had to adjust to her new life with type 1 diabetes. She was permitted to work as a nurse, and had good insurance, but she never knew if her status would change. She began to stockpile insulin, and for years she resisted her doctor’s recommendation to use an insulin pump.

“What if they show up and deport me, or what if I’m in a prison? If I have my insulin just in the vials, it’s easier,” she said.

She finally began to use a pump in 2016. Following that, her immigration status has become more complicated. In 2013, the U.S. Department of Homeland Security determined that, in general, an immigrant’s connection to the Ethiopian political party in question would not necessarily bar that person from being allowed to remain in the United States. However, that order didn’t apply to immigrants like Tigist who were already in some part of the process of being removed by immigration authorities.

In September 2017, immigration officials denied Tigist’s most recent work permit renewal application. She was able to get the permit extended to March 2018, but she has been unemployed since that time. Her husband, an independent real estate broker, was able to obtain insurance through the state of Massachusetts, but she still needs to work to pay for the doctor’s bills and diabetes supplies.

That sense of desperation is absent from Tigist’s calm voice as she speaks. She laughs often, and she is quick to point out that some people have it worse. But it’s clear as she speaks that her permanently unsettled immigration status is getting to her.

She describes how she and her husband have put off having children until her immigration status is determined. She says her immigration judge is a good man and has documented that she can’t be deported. Still, she also worries that immigration officials will simply ignore the judge’s wishes. She worries about a recent report that U.S. Citizenship and Immigration Services in Boston coordinated with ICE officials to detain immigrants after interviews to prove marriage status.

Events back in Ethiopia are also uncertain. Prime Minister Abiy Ahmed has attempted to make peace with those that his political party had persecuted. His government has removed several groups from the terrorist list, and welcomed back exiled members. However, that homecoming has been marred by violence. There is concern the country is inching toward a major conflict between ethnic groups, and that the government may once again clamp down.

Tigist can’t control political forces in her country of origin. Instead, she calls or writes the immigration office every day, even though she worries it will annoy them. She says she has grown accustomed to living in limbo because she has no other choice. Like the daily swings in her blood sugar, uncertainty has just become a fact of life.

*Tigist is an assumed name of Ethiopian origin. We have withheld this individual’s identity and her Ethiopian political party affiliation because of her unsettled immigration status. Both have been verified by court documents, however. The photo above is not of her, but is a stock photo. 

This article is part of a series by T1D Exchange taking an in-depth look at the unique challenges faced by undocumented immigrants with type 1 diabetes. In part two of this series, we examine how health care providers care for a population of people who may be too scared to discuss the added health challenges that come with being undocumented. You can read the other stories in this series here. 

T1D Exchange takes no stance on current or proposed immigration policies. This series is designed to profile the challenges of type 1 diabetes care for a group of people in the United States who are more likely than the average population to have uncertain access to medical care.


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