People have asked me for updates after my first story on lupus in 2014. I detailed how I was faced with lupus while watching my mother suffer from the disease for 14 years of my life before she passed away at home from a heart attack. Years later, I would be faced with the same disease.
The death of my mother was devastating to me. Not only were the last six months of her life traumatizing for me as a teenager, but I watched my mother die in my father’s arms from the top of the upstairs of our house. That experience in itself changed me for the rest of my life. I don’t talk much about it because of how it affected me. I didn’t know that several years later I would be faced with similar complications, later to be diagnosed with lupus. But one thing that stood out to me the most during her years of her battle with lupus was her supportive partner/husband whom I admire: my father.
Lupus is one of those tricky diseases. According to the Lupus Foundation, 1.5 million Americans are living with lupus, most who are women at child-bearing age. African-American and Asian women are more likely to develop lupus than white women. I call it the disease of mystery, because it is very tricky and very hard to diagnosis.
“Reasonably so, I worried about my dating life. When is the right time to tell someone you’re talking to that you have a chronic illness?”
For me, I was diagnosed with lupus after my father saw a butterfly rash on my face after coming home from dealing with some unruly kids while I was working as a substitute teacher. I had scheduled an appointment with my primary care doctor. For many years, my father insisted the doctor test me for lupus. It’s an ANA test to see if the levels are within an autoimmune range. The doctor always refused, stating that my symptoms over the years did not match lupus.
After my father’s pleas, the doctor finally gave in and tested me for lupus. My ANA came back positive. He referred me to a rheumatologist, who then did further tests to confirm I had a mild case of lupus, specifically mixed connective tissue disease. I was glad that I was able to put a name to the many complications I faced during the years, starting when I was 16 years old. My new fear now was: how do I date in world that is so judgmental? I was already being judged based off my skin color and my weight that fluctuated up and down. It was a struggle.
When I was hit with this chronic disease, it really changed my perspective on a lot of things. Reasonably so, I worried about my dating life. When is the right time to tell someone you’re talking to that you have a chronic illness? How will they react? Will they stop talking to you? These were all my fears.
My fears usually are calmed when I think about my father with my mother. He, to me, is the definition of a real man. He stood by my mother when most people would have ran away. I look at my father and realize that a special kind of person has to be with me, just like the special people my father and mother were together. The love that they had for each other was unmatched. The love my dad had for my mother until she took her very last breath is something to be respected and admired. I know that one day I want something like that, and one day God will put the right person in my life.
I don’t let my illness consume me, and for the most part, I try to live a normal life, and yes I date (when someone can tolerate me!). For women or men like me who have chronic illnesses, here are some things I’ve found along the way through my journey:
1. You will be picky with your dating options.
What person isn’t? Especially us women. But when you have a chronic illness, you’re especially picky on who you decide to give your heart to. I always assess the situation before flat out telling someone I have lupus. Once I see we’re starting to get serious with talking, I’ll be honest ― I’ll start testing them. Especially on the days when I get tired. I have to weed out the ones who think I’m unhealthy and lazy because I get tired easily. But thankfully, my good judgment has been able to weed out the jerks and date some amazing people. But I know that isn’t always the case.
“Living with a chronic illness can really feel like you’re living a double life. Living up to a persona that will eventually catch up to you.”
2. You feel like you have to hide it when you first meet someone.
Sometimes you might feel like you don’t want to expose the person you’re dating to your truth because of ugly perceptions out there. I have done that. I have tried to be the strong person, the superwoman. Once, I did that. Traveling, going everywhere, until one day I just got knocked down. They asked me what was wrong, and I broke down and told them I had a form of lupus.
Living with a chronic illness can really feel like you’re living a double life. Living up to a persona that will eventually catch up to you. It’s hard, because you want this person to like you, but you don’t know how they will react when you eventually tell them about your illness. But a great person will be supportive of you.
The simple thing I can say is be yourself.
3. It can mess with your self-confidence.
I admit, sometimes it can. I remember when I lost some of my hair and I had patches, I felt depressed. My weight was fluctuating, even though I turned to a completely healthier eating style. Sometimes my face breaks out in rashes. Last week, as I sat in the hospital for a routine medical procedure, everyone from the medical assistant, nurse, to doctor said I was young to be there. It put a huge damper on me. I keep thinking to myself, what person is going to want to deal with me having to possibly be in the hospital? My lupus is controlled, and thank God, since I’ve had medicine, my stays in the hospital have been stopped. But it can be depressing.
The best thing I can do is remain strong, resilient, and most importantly positive. People gravitate towards those who have self-confidence. A damper mood will exude to the person you’re seeing. Always try to remain positive even though it may seem hard. Hold your head up with pride.
4. It’s okay to think about you first.
It’s okay to think about your health first. Sometimes I used to feel bad about canceling dates, but now I realize I have to be a little selfish.
Selfish is good, especially when your health is involved. But always make sure you communicate with the one you’re talking to about how you’re feeling. This way, there can be an understanding that you may need some personal space without making them feel you don’t want them around.
“It’s hard, because you want this person to like you, but you don’t know how they will react when you eventually tell them about your illness.”
5. Have fun, and you will attract the right people.
Most importantly, have fun and be yourself. The right person will always gravitate to you. It has for me. I’m currently single, but I can honestly say while dating, though I have some challenges, for the most part all of them were very supportive. Please don’t let whatever illness you have define you or your abilities. I always say lupus doesn’t have me, I have lupus. Because at the end of the day, you’re still a person just like anyone else with needs, wants, and desire love. And just like lupus, dating life will have its ups and downs.
Be you, be carefree, but remember to protect your heart.