Breathing Deep and Hailing High
I was a high energy girl until I discovered that my stringent breathing patterns and frequent mood changes (due to the helplessness) were because of my partially collapsed lung. I had a rare category of TB: left tubercular pleural effusion. Before I was diagnosed, I had severe abdomen pain that was not allowing me to curl up on my side during sleep, and I was sure it was the usual seasonal stomach irritation.
TB has changed my life in many ways. In some ways it has ended up being a enriching experience because I was able to use the experience to connect with others as well as myself. I was diagnosed with TB while living in Kenya. At the time I was volunteering in a rural area outside of a nature reserve. I had a lot of experience with TB actually but not a lot of information. In previous years I had lived in Zimbabwe at a Orphanage where I lived and worked with children and adults with HIV/AIDS as well as TB. For some reason I had directly correlated being HIV positive to getting TB so I felt that I was not in any danger.
“Me? I have TB? I’m very healthy.
I’ve never had any major illnesses before, and I didn’t think it could happen to someone like me.” Sarah, upon hearing her TB diagnosis
Sarah is a healthy college student. But when she was 16 years old in 2012, she was diagnosed with ocular tuberculosis (TB). TB is often found in the lungs, but for Sarah TB had attacked her retina. Because there is little research on the treatment of ocular TB, Sarah had to take more TB medication and for a longer period of time than other TB patients. “I was very scared of pills, so when my doctor told me I had to take 9 pills every day, it would take me a half an hour. Eventually I became a pro at it.” She had eye surgery to repair her retina. “After my surgery, I was in a lot of pain, because it was a major surgery. Then taking all those pills, I had abdominal pain too. Just a lot of pain.”
Because her brother had been shunned and discriminated against by extended family and community during his illness, Lynnette became a fierce advocate for the orphan boy, demonstrating to the community that she would care for – not discriminate against – this child. Although she, her daughter, and son spent the next three years with him, only Lynnette and her daughter were diagnosed with latent TB years later while living in Snohomish County. Upon her and her daughter’s latent TB diagnosis in 2012, Lynnette realized she again needed to be a role model, this time for her daughter. She faithfully took the TB medication for nine months, despite some side effects, and all the while encouraged her daughter through her treatment. Lynnette is grateful for being correctly diagnosed and for the treatment she easily accessed in Washington State.
In Lynnette’s words…
“Growing up, from what I know about TB, it is a disease where people are discriminated. I have seen the discrimination in my own family.”
“In Kenya, people will wait a long time before they go to a doctor. That is not healthy, and that is what happened to my brother. My parents did not take him to a doctor until it was too late. But here in the U.S., you can have a friendship with your doctor. Your doctor will take care of you. TB is curable. The more you wait, the harder it is going to be, so the best thing is just get the medication. Get it done with and go on with your life.”
“For the people who are taking care of people who have TB, all they need is that support. Not much, just check on how they are doing. Have you taken your medication? How are you feeling? Just be there for them. TB is just a disease like any other. The one good thing about it is it is treatable.”
In Vanessa’s words…
“I think the relationship you have with your doctor and also the social support system is important. My mom was really supportive and telling me that it is fine.
Doctors here have a way of talking to patients, and making you feel like, “okay we can do this.” But in Kenya, you have to do this by yourself. You feel like you are alone. That is why people get scared in Kenya. But here I meet the doctor every month, I can call my doctor to tell her how I’m doing. That makes me feel like I have a relationship with the doctor. Like we are going through this together. If you’re sick, it is you and the doctor, not just you by yourself.”
“You have to ask questions. You have to tell your doctor and nurses what you are going through and just speak up, so you can get the information.
Jeannette was six years old when she was sent to Laurel Beach TB Sanatorium in West Seattle in l943. For two and one-half years she was the only child at the sanatorium. A girl her age was admitted in 1945 and became her roommate and childhood friend. Their schooling was conducted by a TB patient who was a public school teacher. Gas was rationed making visits from her family very special. Jeannette was released in l947, starting back to school in step with her schoolmates. In telling her TB story, Jeannette found relief from the stigma she had been harboring which is common to the TB experience.
In Jeannette’s words…
“Having TB carried the stigma with it, and I didn’t realize how heavy it was weighing on me until I decided to come to TB Voices Project and tell my story. I started delving into that kind of secret time of my life. The only person I had spoken about it to was my husband, and when I asked him if I should do the project he said of course you should. He was excited for me, and inside I’m thinking should I really come out? Is it safe? At 76 years of age now, I was still harboring that stigma. This project has been a big relief to me because it has taken that stigma somewhat away and I can easily tell people about it.”
“After being able to go home from the TB sanatorium, my mother and I travelled to Seattle every 3 months to my doctor’s office. He was such a wonderful man, I just loved him; he was like a grandfather. The part that I dreaded was would they find that I had TB again, and that I would have to go back to the sanatorium. Being separated from my family and then getting to be with them, I was afraid I would lose them again.”
Loc was busy attending school and working two jobs to provide for his toddler and pregnant wife , when he was diagnosed with pulmonary TB through a screening process at his new worksite. Knowing he had 6 months of treatment ahead of him, he initially felt fearful of having a disease he knew very little about. Loc quickly found support and information from the local health district. He took control of his fears and made his TB treatment his top priority, educating his extended family, and helping to dispel any TB stigma. As a preventative, his 18-month old daughter was also treated for TB.
In Loc’s words…
“You can cure TB. Don’t be afraid. TB is not like the end of your life. It is very, very easy nowadays if you keep discipline with the medication. Then you will have a healthy life; you will be very strong. Don’t waste your time.”
“When I found out I had TB, I searched on the health district website and then I asked their nurse, if I keep discipline with my treatment, will my TB be gone very, very fast, and not harm everybody? She said yes. So I was very disciplined with my treatment.”
“At the time I heard I had TB, oh, I am very scared because my wife was pregnant and I have a daughter as well. I didn’t want to spread my TB to my family and other people at my work and my school.”
“What challenged me is that I was afraid that people would be scared that I had TB. I was afraid that my wife and my family didn’t clearly understand TB; they would be scared of me. Maybe they won’t want to stand near me. But when I talked very clear about it to my wife and family, they weren’t scared. They hug me like normal. It was good.”
In Christine’s Words
The most encouragement I got was from my father. He gave me the character I have now. I never give in no matter what. I don’t give in. My father used to always say to me, ‘you are normal, you are not disabled at all, and you’re not interested in the possibilities of defeat because they don’t exist.’ I will never forget that because they told me that I wouldn’t be able to ride a bike, drive a car, swim, dance, and I set out to do all of that, and I did it all.
Hear more from Christine’s interview here at our TB Voice Project Page.
In 2004, despite risk of infection, Fatxi, a young mother living in Kenya, took care of a family member who had TB. Everyone else in the family had abandoned her due to fear and the stigma of TB. Because of Fatxi’s determination to support and care for this woman and despite being abandoned by the majority of her family, the woman was cured and regained her strength after a nine-month TB treatment. Fatxi believes education about TB and compassion are the keys to getting rid of the TB stigma.
In Faxti’s words…
“If somebody is sick with TB and they know that other people despise or dislike them just because they are sick, they will be stressed. They will be depressed and the situation they have is going to be worse and worse. ”
“One thing I really don’t understand is why people don’t support others who are sick?”
“We are all human beings, we are family, we are friends, we are community, we are neighbors. We need to support one another.”
In 1993, Lynda and her boyfriend were diagnosed with TB. She began taking medication, but the negative side effects made her feel so sick that she stopped and began hiding from the Snohomish Health District employees who were managing her care. Once found, she was homeless and extremely ill with even more health issues that needed attention. Lynda was put in quarantine for one month while the Health District monitored her health. The Snohomish Health District also watched her take every dose of her TB medicine for nine months, until she fully recovered. She credits the Snohomish Health District employees for saving her life. Shortly after Lynda was cured, her boyfriend died from TB.
In Lynda’s words…
“Make sure you are staying healthy even if you’re homeless, eating right, being clean, paying attention to your environment.”
“Make sure you follow through with the public health recommendations. I probably would have been off the whole program a little bit faster if I would have paid attention. Actually, back then I don’t think I really realized how severe the situation was.”
“I was even trying to hide from the Snohomish Health District when I had TB and they found me. I tried the treatment for a while and I just kept getting sicker and sicker. They saved my life. The Snohomish Health District wasn’t going to get their hands off of me, which is good. I wouldn’t be here if it wasn’t for them. Every time I go in there, I just say “thank God.” I’m just so grateful for the Snohomish Health District.”
Lynda, Snohomish County