What it’s like to date when you have a chronic illness

People have asked me updates after my first story on Lupus in 2014. I detailed how I was faced with Lupus, watching my mother suffer from the disease for 14 years of my life before she passed away.

The death of my mother was devastating and the last 6 months of her life was traumatizing for me as a teenager.

On the morning of August 14, 2000, I watched from the top of the upstairs of our house, my mother pass away in my father’s arms. That experience changed me for the rest of my life. I don’t talk much about it because of how it affected me. But one thing that stood out to me the most during my mother’s years of her battle with Lupus and the months that led to her passing, was her supportive husband who 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 uncertain, and very hard to diagnosis.

While watching my mother battle Lupus, I didn’t know I would face similar challenges years later.

I was diagnosed with mixed connective tissue disease 14 years after my mother passed away.

One day my father seen a butterfly rash on my face when I came home after dealing with some unruly kids while I was working as a substitute teacher.

I immediately scheduled an appointment with my primary care doctor. For many years, my father insisted the doctor to test me for Lupus. There’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 or any autoimmune disease, more so anxiety.

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 finally 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, father, and husband. He stood by my mother when most people would have walked 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. And the love my dad had for my mother until she took her very last breathe 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 try to let my illness consume me and for the most part, I try to live a normal life. Yes, I date (when someone can tolerate me, lol). For women or men like me who have chronic illnesses, here’s 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 a chronic illness. Once I see we’re starting to get serious with talking, I’ll be honest, I’ll start testing them. Especially when I get very fatigue. 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 the jerks out and date some amazing people. But I know that isn’t always the case.

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. Travelling, 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 can 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. My face would sometimes break out in rashes. Last week, as I sat in the hospital for a routine medical procedure, from the medical assistant, nurse, to doctor all said I was too 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 chronic illness is controlled, and thank God, since I’ve had medicine, my stays in the hospital or emergency room have been stopped. But knowing you have a chronic illness can sometimes be depressing. The best thing I 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 cancelling 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.

5. Have Fun, And You Will Attract The Right People

Most importantly, have fun and be yourself. The right person will always gravitate towards 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 will have its ups and downs.

Be you, be carefree, but remember to protect your heart.

Cover photo: Nappy.co