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How I’m Choosing to Navigate the Challenges of Dating With a Chronic Illness

I have had a draft of this essay for months. Unable to finish it, I tucked it away until now. I couldn’t ever seem to figure out how to write about dating with lupus, despite having done so for a decade now. But now with a recently failed relationship still sinking its sharp teeth into my ever broken heart, I have been reflecting on what happened. I hope in some small way, my personal experience will guide others to live their true selves while letting light, love and grace fill in the gaps.

Dating is a challenge. Dating with lupus can be even more challenging, especially when you Google the “how to” portion and you get advice like:

“I’m here to tell you that although lupus may add a constraint on a relationship, it is realistic to date, have a relationship and find love.”

“Brochures from the S.L.E. Lupus Foundation can help do the explaining for you, describing symptoms, risks, other important things a person should know about lupus.”

“{It may be} a turn off if you keep such a big part of you a secret and reveal just how much it affects you at a later date. If the potential new partner sees you hiding such a big part of yourself, he or she may ask what else it is you’re hiding.”

OK, let’s be honest here. While I am sure it is a super sexy move to hand your date a brochure about your chronic illness, I don’t think I would consider that exactly my speed. Lupus is a big deal but I think most of the advice on how to date with lupus makes it unnecessarily complicated.
For reasons too numerous to count, those of us with chronic physical and/or mental illnesses are often shamed into thinking that only certain parts of us are actually “lovable.” The other parts are up to us to deal with, hide and pretend like we are “normal.”
First, these are all lies. Being able to love and be loved is the requirement of an entire soul and being. There is no difference in pretending you are pushing through massive amounts of fatigue and pain or pretending you are emotionally available.
Many of us get really good at being alone and then someone fantastic comes along. All of a sudden, we are shamed into self-sabotaging behaviors and we can’t even figure out why. They tell us they don’t care we are sick but deep down, we just know they do. They have to, right? Why would someone want to knowingly date someone who is sick when they can pick someone who isn’t.
Wrong.
But in the process of trying to be too strong, we often fail. Our tempers get short, our emotions go haywire and this person standing in front of us has no idea what is happening. All they know is they can’t fix it.
I am not making any excuses for people who are in a relationship for the wrong reasons. But many people are looking for a real connection, something real enough to want to stick around for. That is tough to do when they aren’t even sure the person standing in front of them is the truest version of themselves.
Lots of people lie about the messy bits of themselves, especially in the beginning. But managing a chronic illness makes it a lot more challenging, especially long-term. And then we end up alone again. Something gets said along the lines of, “I just can’t do this anymore.” And we easily blame our illness and tell ourselves, “See, I was right.”
But the truth is, there is so much more to the story.
I was diagnosed with lupus, asthma and migraines over a decade ago. Last December, I started dating a wonderful man. And then in February, I went to Africa for two months. While I was there, I contracted malaria and got very sick. By the time I returned home, I no longer had it but my immune system was very angry.
For the first 3.5 months after my return, I kept getting sick over and over again. My relationship turned into 6 a.m. ER visits, trips to the pharmacy and doctors, and multiple trial and errors of medications with massive side effects and emotions that were frustrating and confusing as I tried to downplay how bad everything was. But I had contracted a drug-resistant bacteria and I knew if they couldn’t get it under control, a new lifelong struggle would physically ensue and I could hear death take another step closer. I was honestly terrified.
Instead of being totally honest, I minimized where I was both physically and emotionally. Fear gripped my decisions. Out of town family trips turned into me pushing and pushing myself while in a constant pain-haze, And tears always seemed to camp out just below the surface. My patience and ability to reason with small things became weakened as I found myself getting upset over things I couldn’t even articulate.
Immediately, I would literally cry onto his shoulder with as much honesty as I could muster. “I don’t know how to be in a relationship and be this sick. I don’t know what to do.”
And it was honest. It just wasn’t everything. You see, I was still trying to be stronger and do better, even though those two things weren’t even options at this point. I could feel his frustration and hopelessness. We had concerned conversations about things possibly never getting better and me not being able to articulate that having lupus is a series of seasons. I was currently in the middle of a shit-storm.
Now, I could have left things as they were. I could have said, “Well, this is just the way I am and I can’t control being sick, so I can’t control this.” Instead, I surrendered to it all.
“What?” You are probably asking.
Yes, I surrendered to it all.
Sometimes, it is a challenge to focus on what we can control when we are often blinded by our pain. Pain demands to be felt. It screams loudly through our hope and even faith. We scream back for awhile but then exhaustion sets in and we resign ourselves to this life that has been dealt to us.
Not this time. This time I began diligently working with my doctors about medication adjustments and I put myself in intensive counseling. My first session started out something like this: “So I am super sick and my attitude and frustration are ruining my relationship. I have a lot of things we could probably be working on, but right now this is what I need.”
And then for the first time with anyone I have ever known, I opened up a vulnerability to my partner I have never even seen in myself. I let myself feel my pain and calmly told him about it all. I set rules for myself to mitigate the possible wearing thin of patience — like only one late night a weekend. If we did have a late night, I would need a nap the next day. Even if I said I didn’t, I did. Eating on schedule, taking medications on schedule, etc. I kept waiting for the uncontrollable emotions to come back but once I stepped into the uncontrollable situations in my life with honesty, they never came.
I couldn’t believe it. All this fear that had been holding me back from being honest was gone. Things weren’t perfect — life never is. But things changed. And they changed for the better and rapidly. You are allowed to be human. You are allowed to be flawed. You are allowed to have bad days, and weeks and even months. But that doesn’t give us permission to be cruel.
Frustration is not cruelty but coming from a place of kindness can be felt by your partner. They will never fully understand, so don’t put them further behind in understanding by trying to hide how you feel and what you need. Most people want to be kind. Let them.
However, for me it was already too late. The months of figuring everything out had taken its toll. And after additional months of love, light and hope, a single moment was the straw to break the camel’s back.
This is important: It is not my fault he left. Lupus is not why he left. He could have stayed. He could have taken the journey with me. Everyone has choices to make. Health wise, things might never change for me. Things might even get worse at some point. But learning to accept this is it and it is enough for now.
It needs to be a new starting place. Otherwise, our decisions based on fear will continue to destroy our hopes. There is no question I am a better human, girlfriend, friend and eventual wife for having gone through this experience and having dated this man with the intentions I had.
We need to have faith in the confidence of what we hope for. Because there is a realignment that happens when we step out in faith. Without it, we will only have confidence in what we have. But our future relationships will suffer for it. Without faith and hope we are trapped in the past.
Probably like myself, your past has taught you that people leave, people lie, people can’t handle you. Our present becomes a mere reflection of our broken past because we are walking into our future facing backwards. But faith connects us to the future. A future we can dream about, hope about. No other species on the planet dreams about the future like we do.
The reason a lot of our chronic illness-based sadness exists is because we can imagine a different life. (Disclaimer: I am not referring to depression based on chemical imbalances, severe trauma, etc.) Human ideas are the phantom pains of the soul. We long for a world filled with peace but we have never lived in a world with peace. We long for a world full of love but we are somehow missing it for ourselves. And yet, we still fight for that world. And it is worth fighting for.
It is worth finding someone who will fight with us and not against us. Our souls know we have lost something along the way. Finding it is not always easy. It takes actual work. It takes the willingness to go through some deeply personal changes and transformations.
One of my favorite ideas about what is possible is something called the “observer effect” and it goes something like this…
In science, everything as we know it is either made up of waves or particles. Newton believed that light was made up of particles but other scholars believed it was made up of waves. Eventually, Einstein concluded light was both a wave and a particle. Basically, whatever they were looking for light to be, it was. Nothing about the light changed, only the way it was being observed.
How are we observing our own relationships? How are we choosing to manage our illnesses within those relationships? What are we focused on? Because light is the only thing they have found that is both a wave and a particle, which means we have a choice.
No one looks back on life glad they did everything they could to push people away. Everyone always has their focus on the relationships they built throughout their lives.
Our relationships might take some weeding through and a little extra work. Some people will not have the capacity to maintain a relationship, friendship, family, etc. And that is OK. We need to be able to let them go in love. Because the ones that love back will love every part of who you are, even the uncontrollable.
It is so worth the risk.
Don’t wait until it is too late to find out.
A version of this story was previously published at Nicole’s personal blog.