(Part 2 of a series)
“‘I have suffered terrible feelings of guilt for the people I infected. I have also been subject to weird reactions from people I know and love, when they were informed of the nature of my illness. I guess TB still has a stigma attached to it.'”
These are not my words, but from the words of a fellow TB survivor. Her name is Louise and you can find her story here.
To the best of my knowledge, no one else was infected with TB by me (see part 1 of my series). However, what is consistent with Louise’s story, is the personal awareness that TB, as a disease, has a stigma attached to it. More correctly, TB has stigmas (plural) attached to it.
My family was very supportive of me during my illness, although at times, I think it is fair to say that the illness made life more difficult for all of us.
Part of the Health Department’s policy (and rightly so) is to make sure that anyone in close contact with you is interviewed and tested for TB as deemed necessary.
You lose a sense of privacy in order to ensure that your friends and contacts are safe.
I understand that is necessary, but it was also rather difficult for a 17-year-old to wrap her head around. I did not have a boyfriend at the time (thank goodness), but convincing the Health Department of that was awkward.
I was a timid, shy wallflower and into books more than people.
In thinking back now some 39 years since my TB diagnosis, I think the stigmas associated with the disease are what led to virtually my silence about my diagnosis for so long.
Only my closest friends and family were aware of my diagnosis.
What are some of the Stigmas associated with TB diagnosis?
Shame
Shame is a huge factor because uneducated people (defined as lacking in knowledge in this context) assume that the poor are predisposed to contracting the disease. Some believe that TB only happens to those individuals who live in “squalor.”
Because this stigma is so strong, unfortunately, many people will fail to seek needed treatment because they don’t want others to know. Because of the shame, they may put others at risk.
Gossip
This stigma has personal meaning for me.
After returning to high school after initiating treatment, I remember sitting in the high school lunch area with all my friends. My best friend at the time asked if someone could get her a donut. Since I was closest to the serving line, I instinctively got up and brought it back to her.
As I was handing it to her, she asked me, “Did you breathe on it?”
I remember looking at her with a stunned silence.
All our other friends looked a little peevish and uncomfortable.
I managed to eek out a “No, I didn’t.”
For my part, I didn’t take the time to educate her that you don’t get TB from food or someone “breathing on food.”
We talked “around” the subject for years, without really discussing the crux of the issue.
But that is what a lot of 17-year-olds do.
I never asked for an apology; she never gave one.
I don’t blame her; I hope she doesn’t blame me.
It took awhile, but I did forgive. And I’ve forgiven myself. But in reality, our relationship was never the same.
TB and HIV/AIDS
With the prevalency of HIV/AIDs in the news, many people misconstrue the fact that if you have been diagnosed with TB, you also have HIV/AIDs or vice-versa.
The fact that these two diseases are often discussed together is a point of confusion for many people. If you have a compromised immune system (which can be caused by many factors), you can be more vulnerable to acquiring TB. Most, if not all, HIV/AIDS patients have compromised immune systems.
But not everyone who has TB has HIV/AIDs, nor does everyone that has HIV/AIDs have TB.
Hysteria
Using prudent caution to safeguard yourself against any disease is a good thing. Becoming alarmed or frightened because of unknowns is not a good thing.
Health officials warned me that some people would “freak out” when they learned of my TB diagnosis.
I dated a man who when he caught a severe cold went secretly to be checked for TB. The problem at least for me was his choosing to be “secretly checked.” I realize that if he didn’t trust me enough to be open about his concern, there wasn’t much honesty in the relationship.
My best advice from personally experiencing some of the stigmas associated with TB is to educate yourself. Knowledge is a good thing.
Read. Know the details, not just the summaries.
It’s been 39 years since my diagnosis of TB.
In the final part of this series, I will tell you why having TB was the best thing that could ever happen to me, how I met the man of my dreams, and why I thank God He allowed it to happen to me…