You are Not Alone: Hope and Inspiration from the TB Voices Project

You are Not Alone Hope and Inspiration from

Participants of the TB Voices Project

Produced by TB Photovoice.org Teresa Rugg, Director

[email protected]

http://www.tbvoicesproject.com/

http://www.tbphotovoice.org/

[email protected]

Visit TBVoicesProject.com to hear TB stories

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The TB Voices Project

In mid-2013, to honor and better understand the TB survivor experience in Washington State,

TB Photovoice interviewed and documented the stories of 28 people impacted by TB in two

counties as part of the TB Voices Project, funded by the Firland Foundation. Participants

ranging in age from 19-94 shared their perspectives on: the TB treatment experience; stigma;

social support; immigrant experiences; side effects of medication; sanatorium experience; and

the need for TB awareness. The project continues to provide TB education and advocacy

support for people impacted by TB and the community.

This booklet provides hopeful and inspirational insights from the participants of the TB Voices

Project. Through their honest and candid interviews, they wish to help people who are suffering

from TB today and educate our community about TB.

Goal of the TB Voices Project

The goal of the TB Voices Project is to uncover and discover past- present tuberculosis

experiences from residents in Washington State, so as to:

1. Better understand current TB realities 2. Help support persons impacted by TB 3. Provide TB education and awareness to the community

Share

Share this booklet with friends and family who may need extra support and assurances. Visit

our TB Voices Project website to listen to over 25 TB stories.

Index Pages Insights for People with TB 4-11 Insights for Supporting Love Ones with TB 12-15 Insights for the Community 16-18 Gratitude to the TB Voices Project

19-21

Thank you to all of the TB Voices participants and their families for sharing their TB stories. Gratitude to the Firland Foundation for funding and supporting this meaningful project.

http://www.tbphotovoice.org/


http://www.firland.org/



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Take your medication. Don’t forget to take your medication, and have a nice breakfast.

The medication created a very huge appetite. African Immigrant

Just because someone has TB doesn't mean they have HIV. Treat the TB regardless of

what everybody says. African Immigrant

Take your medication every day. If you don’t, it could become resistant. So take your

medication every day. Eat a nice meal for breakfast before you take the medication.

Have someone else there. The day that you don’t feel like taking that medication, that

person will make sure they remind you that the TB could become resistant so you have

to take it. African Immigrant

Even if you feel better, take the medication. I feel that taking the medication is the most

important part. African Immigrant

I spent 3 years and 5 months getting a cure [for TB.] Nowadays, 6 months and you’ll be

fine, and you won’t have to stop your activities, you can still live at home, and you’ll be

just fine. So do it. Beverly

Just don’t give up. Yes, you can be down, but you just don’t give up because you have

to believe that you are going to get better. Always believe that you are going to get

better. You have to believe that. You have to believe that, you know, I’m going to fight

this. I’m going to be normal, and that is what I did. Christine

Insights for

People with TB


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If someone has physical [problems because of TB], you have to exercise, and I can’t

stress that enough with people. It is the best thing that has ever happened to me, ever.

I’m fitter now than I have been for years and years and years. Christine

I’m committed. You have to be committed. TB there is a cure. I don’t think people

realize what your body can do and you’ve got to feed it and take care of it and then it

will take care of you. Christine

Don’t give up. You can’t quit as bad as it is. You’ve got to have your independence.

That is the thing to become independent instead of relying on other people. Christine

You should be grateful that at least they found you had TB. I mean, if there has been a

diagnosis and if it is the right one, which is good, then TB is something that can be

treated, and there is medication here, and is free. The best thing to do is take care of it.

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. Lynnette

TB is a disease like any other, get it treated. Make sure if you are diagnosed with it, let

it be treated. Lynnette

Just put it in your mind that you're going to beat it. Chuck

Insights for

People with TB


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Take care of your body. You know, don’t figure that you have to live your whole life in

the next 6 weeks or something like that. Get your rest. Take care of yourself. You

can’t work all day and play all night. It just does not work that way so just use your

common sense. Doris

Within the last few years, I wrote down memories of my TB experience. Thank

goodness because at one time I wouldn’t have done an interview with the TB Voices

Project, but courtesy of having done the work of writing about it, I can own this and talk

about it. It doesn’t change a lot of the angst about the different parts of the experience,

but there is not the stinger, courtesy of having the work I’ve done in writing about it.

Ellen

Find out what things you can’t do and what things you can do. Because if you don’t

ask, you assume you can’t do anything. Be precise as far as what you can and can’t do.

Have contact with somebody who is recovering from TB because they know where you

are. Ellen

Talk with somebody so you can avoid feeling so different, so separated . I didn’t want to

have to explain my TB situation to anyone, but you know, let’s face it, you have to

accept the fact that there are going to be ignorant people out there and to not let their

ignorance define you. You can find your people but you have to go find them. It is a

dark thing to go through by yourself. Ellen

Insights for

People with TB


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While we can cure tuberculosis it is a long treatment, 6-18 months, depending on

whether there are complications. So, a person with TB really needs to be supported.

There shouldn’t be blame. People often blame themselves too. My suggestion to

family members, friends, anyone who knows someone who is trying to deal with TB

now, understand, it is curable, it is not highly infectious. Yes, people are isolated for a

short term until they are no longer infectious because we really want to protect everyone

in the community. It is not a reason to shun anybody. People who have TB that are

undergoing treatment need to be reminded they are going to be cured, and be

supported through it, and the most important thing is not to fear it. Gary

To the people now that are confronted with tuberculosis or any disease that has a scary

sound to it. I think any disease is scary if you don’t know what it is, how it affects you,

how it affects other people. If you have tuberculosis, don’t be afraid it. Try and get help

right away. If you suspect something is wrong. If you are losing lots of weight; if you

are thin; if you have a bad cough; if you cough up a lot of mucus, if it is something that

keeps going on, if you don’t feel good; I’m not talking about the flu or a cold. Those

come and go and we get over them, but if this is something that stays with you, then go

to a doctor and find out about it. Don’t be afraid. Don’t be afraid now. Go get some

help because there is medication. They can advise you as to what you need to do. If

you need to rest more, if you need to change your schedule, if you need to get on a

regimen of medication, if you need to rest to the point where it affects your job if you are

working, then follow the advice of the medical people that are around you. Find ways to

deal with the solution that you are faced with now. Because you can beat it. You can

get over it, and then you can go on with your life. Face it. Don’t be afraid of it, don’t

hide from it. Many people don’t want to find out what is wrong with them. I’m not one of

those people. Jeannette

Insights for

People with TB


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I think if you are ever going to contract this disease, it is probably a better time than

even in the history of the world because there is hope. So people can be confident that

it is not a death sentence. Joan

If you get a diagnosis of tuberculosis or any kind of chronic debilitating disease, you

have to really find inner resources in the midst of all of the circling around that your mind

does : the high drama; the early death, and all the things that one thinks of. Because I

was connected with a healthcare community, the medical community, I had a lot of trust

in the ability of the healthcare community to take care of me, and that we could figure it

out. I often will say to myself, you know, I don’t know what is going to happen here, but

I can figure it out. Karen

I think that confidence in yourself and confidence in the people that you gather around

you is really absolutely critical to how we progress through this life journey and

especially if you’ve got a diagnosis of TB or some sort of debilitating, chronic disease.

Trusting in the process and the body does heal. The body is amazing in how it will heal

if you take care of it and rest it, feed it well, stroke it well and take your appropriate

drugs. Sometimes it is hit and miss, sometimes you have to try different protocols, but it

is a life journey, is it not? And most of us live long. Karen

Insights for

People with TB


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At the time I heard I had TB, oh, I was very scared because my wife was pregnant and I

have a 18 month old daughter. I didn’t want to spread my TB to my family and other

people at work and school. But I learned that TB is not a disease you cannot cure, this

one you can cure. Don’t be afraid. TB is not the end of your life. It is very, very easy

now if you keep discipline with the medication and then you live your life with a healthy

life, your health will be very strong. Loc

I would tell [people who have TB] not to be afraid. You should go to websites or ask the

nurse in the health district, they will tell you everything and then they will show you how

to treat TB. It is quick and fast. Don’t waste your time. And it won’t harm your body

and it will help your family and the community around. You should follow and be

discipline with the treatment from the Health District. It is not difficult. It is easy. Loc

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 [TB]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. Lynda

Just follow through with the [TB] recommendations on what they tell you to do even if

you’re under the bridge. Lynda

Insights for

People with TB


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But the main thing, is just make sure you’re taking care of yourself. Even if you’re

homeless, get some vitamins and don’t let it get to that point where you’re immune

system is so low that you’re going to catch even a bug that is flying by. Lynda

Anybody who is going to be down for a while with TB, they need to work on their

education. You know, what with internet education now. I was not able to have that or

get that much education each year, now a days that is not a problem. Palmer

If you have TB don't be afraid. You should not be embarrassed to say that they have

tuberculosis because tuberculosis today is quickly treated. Rose

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. Vanessa

Don't be so scared of TB. I think the [TB] stigma is not helpful to those people who

have to go through the treatment and everything, so if we can just get rid of the stigma

and just educate people more. Vanessa

Insights for

People with TB


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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. Doctors will just give you

medication. So you feel like you are alone. That is why people get scared in Kenya.

But here, I’m coming to meet the doctor every month. I can call my doctor to tell her

how I’m doing and that makes me feel like I have a relationship with the doctor and it is

like we are going through this together. So that is the biggest thing, and I like it.

Because if you’re sick, it is you and the doctor, not just you by yourself. Vanessa

To those with physical challenges because of TB: My biggest challenge was being

accepted by my peers. When you are disabled, your greatest challenge is to be like

your peers. Doing the same things as they do during your school years. Then you

have the challenges of your "courting" years - would anyone be interested in a disabled

person. Then having the challenges of birth and then, finally, overcoming the numerous

surgeries later in life. Through it all, you have to say to yourself " I will beat this". This

enables you to have quality of life instead of just existing. Christine

Insights for

People with TB


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Make sure that you don’t give up and that you give them all of the support that you can

muster. Jan

I think the number one thing is not to be afraid. Don't be afraid of that person, or

pretend that it is not there. Make yourself available. Even when the person tells you,

"it is okay. You can move on with your life. I’ll be fine, I’ll be fine." Step out of your world

and your comfort zone and be part of that person’s world. I think that is probably the

most important thing. I think we can’t just listen to the other person’s words, we have to

look at them, their face, and listen to what is being said behind the words. That is hard

for a young person to do, because I think as a young person it is all about you. It is all

about your own world and your fears, your insecurities. But also realizing that this is

your parent, or grandparent, or uncle, or aunt or close friend. They can also feel fear

and insecurity and they also need comfort and reassurance. That is something I wish I

probably had been better at. Chris

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, yeah. The one good thing about is [TB] is treatable. Lynnette

Insights for People Supporting

Loved Ones with TB


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Once you’ve been through this medication, it is a long time- 9 months, for me I don’t

think anything of taking 1 or 2 months of medication. Anytime I’m given a 5-day

medication I look at it and say I can do it. Yes. I’ve been able to take medication

faithfully, I think I pretty much do any kind of medication now. Lynnette

Don't be so scared of TB. I think the [TB] stigma is not helpful to those people who

have to go through the treatment and everything, so if we can just get rid of the stigma

and just educate people more. Vanessa

If you have someone who is sick, whether it is your family, your friend, all you need is to

be with them morally. You don’t have to give them anything, you don’t have to tell them

anything, but the hug that they can get from you is going to make their disease or the

sickness they have, it will ease the pain for them. Because as long as they smile, as

long as they know that there is somebody out there for them, as long as they know that

people care morally and emotionally, in their own mind they will say "You know what,

I’m not alone. I have someone. People love me." We don’t ask to be sick. Fatxi

It is going to be okay. It is not a big deal. So let [your loved one] go to treatment and

then have the medication. It won’t cost you money. And then later [your loved one] will

be healthy and they will test you and your family. Later on the whole family will be

healthy. So nobody [needs to live] with TB forever. Mrs. Smile


Loved Ones with TB


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You don’t have to disown [someone with TB.] That is when the person needs all the

support and help that they can get. Fatxi

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. I really, really don’t understand why people

do that to others. Why people do what they do? We are all human beings, we are

family, we are friends, we are community, we are neighbors. We need to support one

another. This is an issue we need to fix as a community, and the only way we can do

that is through education and to understand what causes TB, and how to help each

other. Fatxi











Loved Ones with TB


15

We most likely did not have anywhere as near the information about TB to start with to

be supportive of this particular person or family with TB. You need to read up, go to the

library, get as much information [about TB.] Jan

To friends and relatives of people who have the diseases such as this, give them your

support in a way that you have always supported them. Don’t be afraid that you are

going to catch something. The person that has the illness will be restricted and will

know that she is supposed to be or he’s supposed to be restricted and won’t allow

themselves to pass on a disease, but if they are able to have people around them, then

don’t shy away from them. Jeannette

I hope that I can assist other people. Because other people helped me to be healthy

and strong and to kill the TB in my body. People helped me with a lot of enthusiasm,

and they were very friendly. I liked that and I want to do something and help other

people as well. It is good. It is very good. Loc


Loved Ones with TB


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Educate yourself. It could be you. What are you going to do? If you get sick. Think

about it. If you’re sick and you don’t have the support and you don’t have the

resources and you don’t know anything, what would you do? You would treat people

the way you want to be treated. Fatxi

TB is absolutely curable. If you or a family member has a concern about tuberculosis, if

you have a cough that just won’t go away especially if you sometimes cough up blood,

get seen, get care, because the care is available. It is effective and that can mean an

entire life not just spared but made whole. Gary










Insights for the Community


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I know that TB is in our community and that there are latent carriers, and so I think that

one has to think of tuberculosis if you have chronic lung condition and clearly you need

to see your physician to figure out what is going on. Thank goodness that we have drug

protocols and that we do have care. The Snohomish Health District has nurses that are

trained specifically in dealing with TB patients. Trusting in that is quite remarkable.

Karen

If you get a diagnosis of tuberculosis or any kind of chronic debilitating disease, you

have to really find inner resources in the midst of all of the circling around that your mind

does : the high drama; the early death, and all the things that one thinks of. Because I

was connected with a healthcare community, the medical community, I had a lot of trust

in the ability of the healthcare community to take care of me, and that we could figure it

out. I often will say to myself, you know, I don’t know what is going to happen here, but

I can figure it out. Karen

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. Lynda



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When they found me, I was said “what’s the big deal? Who cares if I go in the corner

and drop dead. Go away everybody, just leave me alone, I’m sick.” But I didn’t realize

the severity of the whole thing. If, in fact, if everybody knew about [TB], people wouldn’t

be getting sicker and passing away from it, and they wouldn’t be spitting on the

sidewalk, or coughing in public, and on the bus, or going to work sick. You think you

just got the cold and you don’t got the cold it could be tuberculosis or any other kind of

or other bug. Lynda

You have to do some things yourself. You can’t expect the doctor to come to your

house and say "well you know, you look like a person who might have TB." You have to

be really, really on top of it, and seek the care you need. Mary

Try to get information from qualified people that can help you to know about TB. People

should be aware what is going on and that TB has not gone away, that it is still here. If

any of your family show any signs of illness of any sort, respiratory illness like TB, get it

checked out and then do something because TB is here and it is a real potential. Mary

TB touches not just the patient. It touches everybody else outward too. The spouses,

the children, rest of the families. I just think it is a wonderful how far we have come, but

we haven’t come far enough. Every place in the world has not come as far as the U.S.

and some other countries with TB there still is a stigma and even in the U.S. there is

stigma. Mickey



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I’m really so glad that I had this interview and I’m so glad that I had this opportunity to

speak up. This is always in my mind, but I wasn’t quite sure where to start or where to

go, but now I have that opportunity that at least I speak up and say what is in my mind.

I’m so relieved. I am really so relieved and I am so glad and I thank you for that, letting

me do this. It is my honor. Fatxi

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, and 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? And

76 years of age now, I was still harboring that stigma, and so 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. Jeannette

I was very satisfied with the TB project. I believe it'll be of help to bring the disease

(which does still exist) out in the open for the general public's understanding. Marcia

I was very satisfied with the process. My indecision about videotaping versus staying

anonymous was a big decision for me. There was no pressure from anyone as to what

I should do. With the support and encouragement I had from my family and opportunity

afforded me by the TB Voices Project, I found I wanted to videotape my experience.

During the process of delving into that period of my life and finding photographs and

letters that made it real again, I felt the stigma leaving me. This process was healing for

me. Jeannette

Gratitude to the TB

Voices Project


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The process of the TB Voices Project is very professional, I am so satisfy with the way

Teresa and her colleague approach to the TB issue. They made me feel comfortable to

share all of my TB experiences without any hesitate, and made me feel that I must have

responsible on so that we can help the new TB person as well as the communities

around. Loc

I thought it was very rewarding to me and was impressed with the professional way in

which the interview was conducted. Christine

I was satisfied with the interview process. I did feel somewhat questioning as to what

you were looking for--nature, direction, scope of my sharing, but I realize that by

suggesting you would in a way limit the sharing rather than fruitfully leave it open. The

difficulty in the experience is that you don't know yourself where it hurts until something

triggers it in memory. Ellen

This has been an awesome experience for me and I thank you for suggesting it! It has

been an education regarding TB, and an opportunity to learn more about my own family.

So, maybe a second word would be "bittersweet." Joan

I think this program is wonderful because it is acknowledging. TB touches not just the

patient. It touches everybody else outward too. The spouses the children. The rest of

the families and things like that. But I just think it is a wonderful where we have come,

but like I say, we haven’t come [far enough.] Every place in the world has not come as

far as the U.S. and some other countries with TB and there still is a stigma and even in

the U.S. there is stigma. Mickey

Gratitude to the TB

Voices Project


21

I am so glad that I made that phone call to you, Teresa. It has totally changed the part

that my TB experience played in my life. I no longer feel the stigma that I associated

with my TB experience. It had always been a part of my life from which I tried to

disassociate myself. It was so ingrained in me to not speak of it, to forget it, and go on

with my life. But now, I can embrace it and complete that part of my life. Thank you,

again. Jeannette

One area I became very conscious of was how fortunate I was to be at a point in my life

where I could not only look at and fully feel [my TB] experience but also put words to it.

This also became the gift I could give my friend with whom I had shared the [TB]

experience. I could give voice and words to what she couldn't address or express.

This added to the friendship bond we have. Ellen

This has been a bittersweet experience. I learned more about my grandmother and

have great respect for what she went through. As part of this process, I saw my

grandfather in a new light. Before, I didn't really appreciate his struggle to raise four

small children on his own. Knowing some of the facts has allowed me to adjust my

attitude toward him (which had been pretty negative.) Thanks for the opportunity to

delve into my family's past and actually heal some hurts! Joan

I hope that I can assist other people. Because other people helped me to be healthy

and strong and to kill the TB in my body. People helped me with a lot of enthusiasm,

and they were very friendly. I liked that and I want to do something and help other

people as well. It is good. It is very good. Loc

Gratitude to the TB

Voices Project

Documents

You are Not Alone: Hope and Inspiration from the TB Voices Project