Florence Tewogbade

I wish I could invite the "me" of 20 years ago to have a conversation. She was fearless.

The younger “me” was tough as nails. She wasn’t one of those kids who ran home to Mommy after a schoolyard dispute. Once, in grade 3 or 4, she got into a fight with a boy and threw him to the ground. He got back up and punched her in the face. She didn’t flinch, and she didn’t cry.

In high school and afterwards, life was unpredictable. She was in and out of the hospital. She often went to sleep not knowing what news she would get the following day. Still, she handled her struggles with grace and courage. She did her thing: She went clubbing, she went to bars with her friends, and she met people. Despite it all, her personality shined through and she maintained her self-confidence.

That toughness faded away in November of 1996, when I was diagnosed with lupus. I went from being a healthy, athletic teenager who used to ride my bike for hours to someone who spent weeks at a time in the hospital, so weak that I could barely get out of bed.

I do flinch now, and often I cry. I have been forced to adopt a whole new kind of toughness, because this new life can be tough.

 I do keep in touch with old friends and sometimes hang out with them, but their success is discouraging. It’s tough to go on LinkedIn or Facebook and find them doing well, getting jobs and starting families, while you’re nowhere near that point in your life. In fact, you’re in the same place you were in even before going to school. I’m happy for them, of course. I just wish I was doing well too

I went from being very social and outgoing to someone too shy to speak to others because of the drastic change in my appearance that medications caused. The puffy “moon face” of prednisone was most noticeable. It also caused stretch marks on my arms and legs, and caused hair to grow on my face. 

People would often tell me when I was younger that I was pretty or cute. I don’t hear such compliments any more. When I used to work as a cashier, one customer liked to point at his face and puff out his cheeks and laugh at me. One of my colleagues said, “What happened, Florence? You used to be so beautiful!”

In relationships, even though I knew when I wasn’t being treated right, I wouldn’t leave. I felt like damaged goods, lucky that a man--any man--would want to give me the time of day.

I can't get a job in my chosen field of human resources (HR) to save my life. I have celebrated my 10-year anniversary with my current employer, working in customer service at a bank. I went back to college and completed my HR diploma in 2012, and have been applying almost nonstop for a position in HR. I have had two interviews, but no offers.

I have participated in lupus walks, in interviews, and so on. Much of this information is available with a simple Web search of my name. I often wonder whether recruiters see my name, Google me, and then decide against interviewing me because they see that I have an illness.

Nobody wants to give me a shot. Meanwhile, several of my friends have gone into HR and won promotions to manager or coordinator, helped by networking. I hope that if a role were to come up in any of their organizations they would think of me. I’m bright and I have a lot to offer too.

Articles

That smile on your patient’s face may conceal a great deal of pain that goes along with having lupus, much of which is not actually physical. Here, a patient in her early 30s describes how a lupus diagnosis changed almost everything.

A Visit With the Me I Used to Be

I avoided dating for many years after I started dialysis for lupus nephritis, because I didn't feel I was ready to devote myself to someone else.

When I was on dialysis, I wasn't really confident enough to "put myself out there" and start dating. I'm not sure why. I know lots of people who do it, but I just couldn't.

Then, a few months after my transplant and almost 9 years after I started on dialysis, I felt ready. I felt comfortable.

In the first place, I didn't know what to do in order to try to attract the right person. Then I didn't know how to keep him.

My main concern is telling a man about my struggles with lupus. How do you tell someone that? Will he get spooked? How much information do you share? And when, and what? 

Of course I have to tell the other person about the lupus and about my kidney transplant. But when and how should I tell him I have a fistula, I have a huge scar on my stomach? I had my hip replaced too. And on and on. Eventually everything else will have to come out.

Clearly these different issues do not define me, but it's also not something I'd want to hide, you know?

When I find a half decent guy who is willing to give me the time of day, after I have told him just a fraction of the things that are wrong with me, if he doesn't run right off in the other direction, I feel I had better hold on for dear life. I feel so damaged that I perhaps don't have the right to comment about how I'm being treated, or about what guys do to make me mad or upset.  My relationship may not be normal, but that is just what I have to do if I don't want the guy to leave me.

Sometimes I feel like I just want to be 100% okay with myself before delving into any relationships. I think that is a fair thing to want.

About 13 days ago, I went out for my first date with a gentleman I met online. 

The evening was still young after we went out for dinner, so we decided to go back to his house and watch a movie. After that, we got to talking, and he told me about a couple of struggles that he had had in the past. His honesty inspired me to tell him about the most important thing that has happened to me recently.

I explained to him that I had a kidney transplant and that my brother was my donor. He asked me why my kidneys failed, and I briefly explained to him that I had lupus and what it is.  

He went quiet for a minute, and then said, "I don't know what to say."

Damn, I thought. I guess that's it for this guy.

Then, he did speak. "Actually, I do have something to say. I think your brother is a pretty stand up guy for donating a kidney to you, and I think it's great that you have such a strong and close family that supports you. And this doesn't change anything."

Those were the words I was looking for: This doesn't change anything.

With all of the things out there that can cause stress in a relationship, what kind of person would willingly commit themselves to someone who has such an unpredictable disease?

In the end, the more I ask myself that question, the more I realize how many great people there are out there who are not bothered by such things.

Dating probably doesn't enter the conversation very often during visits with your lupus patients. Here, someone who has had more than her share of struggles with lupus describes trying to find someone to share that difficult life.

Author | Florence Tewogbade

Articles

A Visit With the Me I Used to Be

Lupus, Love, and Realities About Relationships