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Monday Reflection: What Kind of Caregiver Are You?

By Rae Lewis-Thornton

June 20, 2011

Two days out the hospital, 2008.

Two days out the hospital, 2008.

This piece originally appeared in Rae's blog, Diva Living With AIDS.

I have AIDS and there is no denying this fact. It doesn't matter how good I look, how wonderful I sound, or what schedule I push myself to maintain -- I have AIDS.

And while I put up a good front at normalcy, there is nothing normal about my life. The fact that I try to maintain, "Normal," isn't even normal. And over the years I have learned that people seem to focus on the wrong thing when it comes to my health. Like fresh out of the hospital, people tend to focus on how "good" I look rather than what I may need to help me recover.

And I've often wondered if that is a form of denial for themselves to help them deal with the fact that I'm so terribly ill or is it their excuse to half ass on their support for me.

I've been giving a lot of thought to this because lately I've been pretty sick and this week in particular was designed by the devil straight from hell. Over the years, I have had soooooo many people say that it didn't matter what I needed, that they would be there, but in the end to find myself alone or doing it myself.

I've had people jump on my celebrity bandwagon at its height and disappear at its low point. I've had people who started out with me and faded along the way because dealing with my health is exhausting. Just too fuckin' much; so they just stopped calling and stopped doing. Over the years I've learned to accept their broken promises and keep it moving.


Having a chronic illness is lonely. I can't even explain what its like to be in the hospital receiving IV medication on Tuesday by myself. I'm grateful for my Twitter family because they keep me laughing and my mind preoccupied as best as they can and it helps to get me through that long day. But then I have to come home and crawl in this damn bed and at that point it's just me and Sophie. And the trauma that my body is going through is nonnegotiable, I can't avoid it, I must endure it. Enduring the physical is a hard hit to one emotionally.

And God forbid that I have to pull myself together and be "normal" while my body is still traumatized. Like the last two weeks. Week before last, I got on a plane and went to San Francisco to speak for the 100 Black Men and turned right back around to come home for a personal event that was important to me.

But then last week, after 6 hours of trauma, I had to make myself be "normal" again. Dress and then get to my Tweet-Up for National HIV Testing Day and that took every freaking thing I had in both my body and spirit. But I did it, because that's what I've trained myself to do. But just because I do it, doesn't mean that my body isn't going through the same trauma as if I were to crawl into bed. And actually it's going through a tad more, because I've focused myself to do, when I should be resting. Any who, I wonder what people actually think about their role in caregiving and what it really means for me to be sick. Like where do you fit in? And where do I fit in?

Caregiving is hard! I did it. My mother had cancer for 3 years and I took care of her and myself. It requires sacrifice. Unconditional love is even harder! Yep, I did that too, because my mother was the mean ass woman sick and dying that she was living. But what I did was in spite of her and because of me. ... Because of who I am and what my God expects of me.

I've learned over the years, that people take caregiving lightly. They say, if you need something call, but proud people typically never pick up the phone and call. Which frees them up of actually doing anything. And when people tell us, do we really hear them? Like for example, when I say, I can barely hold my body up, I wonder what that means to people? I wonder if they wonder how I'm eating or even making it to the bathroom for that matter? Or what effort it must have taken for me to get dressed, given the fact that holding my body up is an issue.

But let's take it a step further, if I can barely hold my body up, then cooking is not an option. Even if I put it in the microwave, then do dishes ever get cleaned? I just wonder if you have ever just showed up on the door step of your family member or friend with AIDS or another chronic illness with a meal in tote or a mop to clean for them. Or do you bring them a meal, look at their dirty dishes in the sink and keep it moving. I wonder do you know more about my life with HIV/AIDS than your family members or good friend? I just wonder. ... Do you take them to the doctors and drop them off or have you actually stayed with them. By the way staying says, I love you and I'm not ashamed of you.


Because you give in one area of their life, is it OK to be insensitive in another area of their life? The thing is, their health effects ALL areas of their life.

The role of the person who is ill will never change -- that is to get better. Whether you show up or not their life will move steady and typically we adjust. I've learned to do what I must because I have no other choice especially with no family. But for sure my life is NOT normal no matter how it might appear. And while I try hard normalcy, I fall short and that in and of itself is a crude reminder that AIDS dictates much of my life.

Fighting an illness day in and out takes a toll both physically and emotionally on top of what they have to endure with the original illness. The side effects from the medication are a nightmare. I know they are for me. The expectation of normalcy is not fair. Nothing is normal for them. Nothing. Yep, I'm going on record: My life is a bitch. I fight hard to keep it together but this shit is hard. It's even harder trying to go it alone.

I just want you to think about how you really give care to that person you love. Have you dismissed what they have told you about their health because they look good? Is it denial because to consider the real health issues is to much? Do you give care out of convenience? Don't ask them what they need and then don't show up or show up with an unfair expectation of them, that hurts more than going it alone.

Or is how they "appear" an easy way out? She's cool. I saw her on Twitter She's at an event so on and on. Have you really taken time to think about the value you can truly add to someone's life based on the real information they have given you about their health?

And when you actually do give, is it predicated on their ability to give back? Their capacity is limited no matter how it appears. I will say it again, their life is not normal. And why do you have any expectation of that person other than for them to get better? Be better.

Have you really thought about what role you can play even if it's in a small way? I use to say to the church folk and I say it again, people need more than prayer. Jesus preached to the hungry souls of the 5,000, but He also fed their hungry bellys.

Post Script: I am still very ill. I will blog as much as I can, but I will have guests this week as well. What kind of caregiver are you?

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See Also
More Personal Accounts of Women With HIV/AIDS

Reader Comments:

Comment by: TiyFlies (San Leandro, Ca) Thu., Jul. 21, 2011 at 2:47 pm UTC
@ Rae and commenters, thank you for sharing yourselves.
I have been positive for 22yrs and my life is "normal".
How is normal defined? Is it based on how we perceive other peoples lives or is it based on a more predictable internal analysis of who we are and what is showing up in our lives?
Why do we pretend to be "ok" if we are not? Maybe we want to be seen as ok, holding it all together. Then we feel uncared for when people treat us like we got it all together. Our authenticity is far more important to our health.
When I started a new med and diarrhea made it impossible to get my kids to school on time...I let all concerned know that yes I look great but this is our new normal for awhile so lets act accordingly.
When I was diagnosed in my twenties all I wanted was to be "normal"like my twenty-something friends: clubbing, meeting guys, having what I thought was a great life. Thank God I didn't with my personality and immaturity I may have been talking about something worse than AIDS.
In short, l have really benefited from determining my own normal and being very clear about what I need and expect.
Rae I look forward to following you on tweeter! Take care all.
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Comment by: Michael (Haslett, MI) Thu., Jul. 21, 2011 at 1:23 pm UTC
This is so true, not only with HIV, but many hidden type disablities. You can look like you are so healthy and don't need any help, yet people could be so far from the truth. If they only knew of the hidden type disablities. Some of them can be worse then visual disablities.
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Comment by: Louise B (Chicago,il) Fri., Jul. 1, 2011 at 12:53 pm UTC
I agree wholeheartedly. This life is definitely not normal. No matter how hard I try to fake it daily. Its like wearing a mask.People say my you are so attractive, you look so good and healthy. You dont look like you have HIV and to think these are the people i have disclosed to. I live in a world of isolation. Most of the time rejecting the attention of men because eventually I will have to tell them and they will just run in the opposite direction. People in the field constantly focus on meds and research advancement this is all well and good but what about the social aspects of dealing with this; Of being an attractive, well educated African American Woman living with HIV. Whre is our outlet? Who do we really get to share with that truly understands.What about the single sisters like me living in silence on the outside having it all together and slowly dying on the inside because again this S..T just aint normal. Who do we talk to about the anger Angry because i still feel victimized and violated even after 10years. Victimized becase he said He'd love me for the rest of our lives. Gave the meaning until death do us part a whole new meaning.Left him couldnt stand the sight of someone who could be so careless with my life and my love. Forced to raise my two kids by myself. People say Thank God you're okay Yeah we are still alive viral loads undetectable and believe me we thank God for that everyday;but are we really living cause again this S..t aint normal.
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Comment by: Gisele V-P (Winnipeg, Canada) Fri., Jun. 24, 2011 at 9:40 am UTC
Thank you Rae!Thank you for having the guts to say what rarely gets said. Caregiving isn't asking if this is a good time to drop by for a visit. I rarely want to visit, I rarely want to even get out of bed and get dressed. I have one friend who understands that I may look good, I certainly don't feel good. I've had HIV for 27 years. In that time, I raised 3 children, on my own. Not once did anyone phone to see if I could use a break. I cared for my parents when they were ill and dying. People will tell me how independant I am, as a compliment. But I never had a choice but to do for myself, otherwise, it simply didn't get done.

No, I have not had a normal life, though I can fake it pretty well.

I saw my doctor last week, and I told him about an article I read here in theBODY about the growing 50+crowd living with HIV. He thought that was great. I didn't get a chance to tell him that the main message of the article was that aging with HIV just meant more of the same stigmatization, more isolation and even less community care.

Living longer does not mean we're getting better.

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Rae Lewis-Thornton Speaks

Rae Lewis-Thornton

Rae Lewis-Thornton

Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.

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