By Ijeoma Oluo
I was twenty years old when I received my diagnosis. I had recently given birth to my first child and was reeling from the September 11 terrorist attacks a few days earlier, when I got a letter in the mail.
“THIS IS NOT ABOUT AIDS OR HIV” the letter said in bold at the very top. Then, in very plain and clinical text, the letter informed me that the cord blood I had donated at my son’s birth tested positive for Hepatitis C. I should contact my physician for more information. I held the simple piece of paper in my hand and wondered, “what in the hell is hepatitis C?” Surely it couldn’t be that serious – you don’t send serious diagnoses in letters, you call at least – right?
“Give me time to research a little before you come in,” my doctor said when I called for an appointment. She didn’t have any other patients with the disease at the time. As I waited for my appointment I did my own research. Hepatitis C was a potentially fatal chronic illness that attacks the liver. It is primarily transmitted blood-to-blood, so the majority of people diagnosed were Vietnam veterans, IV drug users, people with HIV (it is easier to get if you have HIV), nurses, and people who received blood transfusions before they started testing donor blood in the early 90’s. I was in the last category, having most likely contracted the virus from blood transfusions shortly after my premature birth.
In the months that followed, I saw specialists. I had a traumatically painful liver biopsy, my mom holding my hand as I cried through the procedure – barely an adult, with a new baby, and a devastating diagnosis. After all of the tests and procedures, and after having my son tested to make sure I hadn’t passed the virus on to him, the specialist reconfirmed my diagnosis. I was lucky, she said, often people who have had the disease as long as I have are in bad shape, but I was healthy. And then she told me that there really was nothing else to do. Treatment at the time was very expensive, with side effects often far worse than the disease, and because of the genotype of virus I had – I only had about a 20% chance of it even working.
“Do you have anybody to help take care of you?” She asked. “Do you have anyone to help support you if you become too sick to work?”
I shook my head, I did not. I was a young black mother getting ready to leave an abusive marriage. I was more on my own than I had ever been in my life.
“Well then, I recommend just waiting,” The specialist said, matter-of-factly, “There will likely be better treatments eventually, and I don’t think you will die before then.”
As I worked my way through the beginning months of my diagnosis, I did what just about anyone facing a life-threatening disease would do – I reached out to my community. But the looks I received from people outside of my immediate family were wary. I didn’t understand the lack of support and sympathy until one day, after explaining my diagnosis to a close coworker, another coworker pulled her aside and said, “You need to tell Ijeoma not to talk to people about her hep C like that. It’s for dirty people.”
Oh. It’s for dirty people.
Suddenly I could hear all the comments that people casually made. Suddenly, I could hear all the jokes about all the unsavory things people do that likely, and according to the jokes rightfully, give them hep c. Hepatitis c was a disease for drug addicts and people who had “risky” sex. I even remember a friend telling me that instead of getting an STD test, he just gets tested for hep c, “If you don’t have that, you are probably clean” he mused. I wanted to argue that hep c wasn’t an STD and that people had it for a myriad of reasons, but I knew that would give me away. I just stayed silent and let the shame crash over me.
I spent the next decade filled with secret fear. Every illness I wondered, is this it? Is my liver finally starting to fail? I was so afraid of having to leave my children, my babies. I was so afraid my health would go downhill and I wouldn’t be able to support my sons. Every doctor and dentist that I had to disclose my illness to looked at me with a puzzled face. A few even said it, I didn’t look like someone who would have hepatitis c. I looked like I’d lived a “clean” life. But once they knew, they stopped looking at me like someone who had lived a clean life.
In 2010 everybody in the entire country seemed to be laughing at Georgia congressman Hank Johnson. In very slow and almost labored speech, he had told a Navy admiral that he feared that additional soldiers would cause the small island of Guam to capsize. People shared the video clip of Johnson asking the ludicrous question and laughed, “what’s wrong with him!” “look at this fool!” Soon, it was revealed that Johnson had been long battling hep c, which regularly impacted his speech and his cognitive function. I watched the video about a dozen times, and I read all of the mocking comments, and I cried. I cried alone in my living room at midnight, while my kids were asleep. Would that be me? Would I become a laughingstock? My chest tightened with panic and I desperately wanted help, but as I looked around, there was no help to be found.
When it was announced in 2012 that a safer and more effective treatment for hepatitis c was being developed, I scoured the internet for more information. I set up a google alert and checked for news every day. I didn’t tell anybody of my new hope, that maybe a cure would come along and I could get treated before anybody knew I had the disease. I finally screwed up all of my courage to go back to the doctor in 2014, shortly after the new treatment had been made widely available.
I went through another battery of tests. Yes, I was still sick. But just like before, there was nothing to be done. Yes, the medication would most likely cure me, but I wasn’t sick enough.
“There’s no way,” the doctor said flatly, “You have to be practically dying to get approved. Come back in a few years.”
I had to be dying first. People who die from hepatitis c don’t die easy deaths. They die confused, unable to speak, yellow from jaundice and bellies painfully distended like they are pregnant, bleeding internally. I didn’t want to get any closer to that, but apparently, I would have to if I wanted to ever get treatment. I went home and laid in bed for two days.
Life goes on, and as I moved into my writing career, I tried to push my disease to the back of my mind. I became known for my personal essays on sometimes controversial subjects, but I didn’t dare write anything about my disease. And the less I said about it, the more I felt like a fraud. I cut people out of my life, I didn’t want to ever have to explain this disease to anyone and then have them know how dishonest I’d actually been with my “open” persona.
It was ironic that it was only when I started writing that the “hepatitis c brain fog” started to really set in. My depression and anxiety increased dramatically, my ADD symptoms became unmanageable, and I couldn’t remember words. I would spend countless minutes staring at my word document trying to remember what word I needed for that sentence. Phone conversations became unbearable as I struggled to stay focused and communicate effectively. I began to feel like I was losing my mind – and in a way I was. I don’t know if it was just the hepatitis c, or if it was that and a combination of the overall mental stresses of battling a chronic disease for so long, but I was a shadow of my formal self – at a time where I couldn’t escape public scrutiny.
Finally, after years of accumulating mental and physical symptoms, I dragged myself into the doctor. I had been to my doctor – the same doctor who had talked me through my diagnosis 15 years earlier, plenty of times. I’d been checked for various ailments that might be causing my problems – my thyroid, my blood sugar, my iron levels. But this time I decided to finally voice my suspicions.
“I’ve done some research and it looks like a lot of what might be happening to me seems to happen to a lot of people with hep c,” I said warily, expecting to be shot down again. Expecting to be told that there was nothing to be done.
My doctor raised her eyebrows at me and said, “Huh. Why haven’t we treated you for that?”
The notification of my approval was just as underwhelming as my initial diagnosis had been. I received a call from an 800 number and an automated voice informed me, “Your prescription request has been approved. Thank you.”
I assumed it was for a recent change in my ADD meds and paid it no attention.
It wasn’t until the next day as I was driving when it hit me out of the blue: could the “prescription request” be my hep c treatment? I didn’t dare hope, but I called my insurance company. I was on hold for 20 minutes as the rep looked through my records. He got his supervisor to help him understand the information and he finally responded brightly, “Looks like it is an approval for a …..Harvoni? Man, that’s an expensive medication.”
I had been approved. I was going to be free. I pulled over my car and sobbed. I leaned over my steering wheel as my chest heaved and I thought I was going to break apart. Fifteen years of fear and shame and pain and I was finally going to be free.
My elation was short-lived as the reality of the treatment set in. Yes, a lot of people went through this treatment with no problems. But some people, not an insignificant amount, suffered from severe side effects. Some people even got cancer or died of heart attacks linked to the medication. I was scared. And I finally realized that I’d had enough. I had lived with the fear and pain of this disease alone for 15 years, I simply could not go through the treatment alone as well.
So I waited until about midnight and I posted a video on Facebook, letting my friends know what was going on. As is usually the case when confronting a lifelong fear, the reality was anticlimactic. Some people asked concerned questions, but most people voiced support and said that they were glad that I was finally able to get the treatment I needed to help make sure I could stick around for my children. The medication side-effects were also anti-climactic. I was sick for one day, and then my life continued on as before. About a week into the medication, the fog on my brain started to lift. I didn’t realize how bad it had been until I suddenly didn’t have to struggle for words anymore, until I didn’t wake up thinking that the world was impossibly gray before I had even opened the curtains. I realized what I had been suffering under for so long and once again, I cried. I cried for 15 years of suffering.
Here I am today, in the middle of treatment. I don’t know yet if I’ll be cured, but the odds are in my favor. Even if this treatment doesn’t work, I know that I won’t have to go through the next steps alone anymore. That alone is enough to give me more hope than I’ve had in a very long time.
There are approximately 3.5 million people in the US living with hepatitis c right now. Many are undiagnosed due to the silence and stigma around the disease. Many who are diagnosed will die horrifically painful deaths while they wait to be approved for a $90,000 cure. Patients around the country are being told that they aren’t sick enough yet, and they do not measure your sickness by the physical or mental effects of this devastating disease, most insurance providers look only at the state of your liver. In some states, you have to have stage 4 cirrhosis in order to be approved: by that time, your liver is as hard as a rock and you will have likely been suffering from horrific mental and physical effects of the disease for some time. But there is relatively little outrage that so many who have a disease so closely tied to drug use and HIV are dying in pain when there is a cure. Studies have shown that “because the vast majority of people with hepatitis C have a history of intravenous drug use, they are frequently blamed for acquiring the disease, and viewed as irresponsible, unaccountable and “unworthy.”” Studies also show that this stigma even affects the way in which we are treated by physicians and nurses with 60% of hepatitis c patients who have felt stigmatized for their disease also reporting discrimination in their doctor’s visits. There is no push for the millions who are likely infected and undiagnosed to get tested. We haven’t lived clean lives, so nobody wants to fight for us.
While many states claim that they cannot afford to fund treatment for all those who are infected with this deadly disease, the majority of states at the same time are also neglecting to fund efforts that would prevent future infections. One of the leading causes of recent Hepatitis C infection is intravenous drug use, and as our opioid crisis reaches epidemic levels around the country, states are still reluctant to fund clean needle exchanges and drug treatment programs. We currently have a system where 3.5 million people are infected with a disease that almost nobody wants to talk about, where nobody wants to fund prevention efforts that could save thousands of lives, where drug companies can get away with charging $1,000 a pill to treat this disease and there is no widespread public outcry, where states can then say that patients have to be on the verge of death and have sacrificed years of their mental and physical health before they will cover treatment, where many doctors force patients to prove that they are “reformed” enough by abstaining from drugs and alcohol before they will recommend treatment. Even private insurers have only started opening up treatment to patients of all cirrhosis levels in the past year, only after the threat of lawsuits from patients and families of patients who were dying while waiting for treatment.
Nobody deserves to die in pain and misery from a disease that can be cured. There is nothing we could have done to deserve that. We all deserve to be treated with basic human dignity. The stigma surrounding diseases tied to “undesirable” behavior impacts people suffering from many diseases – not just Hep c, but also diseases like HIV/AIDS, lung cancer – even type 2 diabetes. And that stigma kills – it keeps people away from diagnosis, it keeps people away from treatment, and it makes them do so in silence and shame. Everybody deserves medical treatment. Everybody deserves care. We are worth fighting for.
Ijeoma Oluo is a Seattle-based writer, speaker & internet yeller. She was named of of the most influential people in Seattle, by Seattle Magazine. She’s the Editor-At-Large at The Establishment – a media platform run and funded by women.