How To Be A Partner To Your Partner With Lupus - Relationship Advice

Dear Veronica,

My wife has Lupus. I need some help. I feel like everything I say is wrong. It’s a recent diagnosis. She has apparently been sick for a very long time and I was even aware of some of the things going on when we just met but no one knew it was a disease. Recently we learned all these other things going on with her related to this one thing too. Maybe we just both need time to adjust but I feel like she shuts down and doesn’t communicate. I try to offer advice and look things up for her I have all the links to the sites and we have good doctors. They all help with medical answers.

(…) So really what I need is relationship advice. She pushes me away and when we do talk it’s always a fight. It winds up with her being defensive and crying. I don’t know why and I don’t know what to do. What do I do?

Bears13

Dear Bears13,

First I want to say, you are awesome. There are several great tells in your email, like the way you say “we” have great doctors and “we” have to adjust. You think like a partner, and that’s fantastic.

My Lupus was diagnosed when I was 45. Like your wife I suffered from life-long symptoms not knowing what was wrong.

Everyone inflicted is different. Not only does Lupus vary from systemic to sub-q and person to person, it also affects each person differently on an emotional level. But I think what I’ve experienced is probably similar to what your wife has gone through judging from what you’ve shared.

I left all of the very personal parts of your email out. I’m going to come at this in a general way sharing with you what the hardest part was for me. I’ll mention what was going on medically so it makes sense, but the medical part is not the point. The point is how living with it made me feel. From your description of your wife shutting down and pushing you away, I really think this will relate. Then I’d like to offer some advice once you understand what the issue really is. And you can take it from there.

For me...

Here's a passage from The Lupus Site:

  • “Some {Lupus} patients complain of feeling unwell after going out in the sun, even for relatively short periods of time. For example, they may develop migraine, nausea or joint pains… A true attack of arthritis due to increased activity may follow. These are all manifestations of light sensitivity in lupus patients.”

It goes on to explain that other aspects of Lupus increase after sun exposure. They include epilepsy, kidney disease, lung disease, and neurological disorders.

I have always severely suffered from extreme photosensitivity. In the sun I’m a mess. I’m unable to cool off. I feel nauseous, pain in my joints, the feeling that my organs are shutting down, and this overall overwhelming sensation that I’ve been poisoned. Now I understand that all makes sense and it’s part of a disease. But I didn’t understand that for the first four and a half decades of my life.

When I was little I remember being told to go outside and play, which was fine as long as it wasn’t warm out. And this is the thing with many Lupus sufferers: many aspects of my physical body and the way I lived life were fine. No one knew to look at me that I was sick including my parents. I was fine as long as I wasn’t hot. I went sleigh riding & ice skating. I played hockey. I skied. I was strong, seemed fit, looked fine. I experienced fun, friendships, and many aspects of a seemingly normal life.

And then it would be warm or sunny and the whole world would change.

I’d go outside into the summer sun and I felt horrible. I had kidney and joint pain, I was dizzy. I had trouble breathing. No one was sympathetic. I’d get teased and made fun of. I was called a faker or a liar in school and in different social situations. My mother would insist I was being dramatic and yell. If I wasn’t outside in the sun in the summer when she told me to go out and play, I was in trouble.

Keep in mind I had no way of knowing that everyone didn’t felt as I did in the summer. I’d say to someone, “My god aren’t you hot?”

And they’d respond with a shrug. “Yeah, so what. It’s nice. It’s beautiful.”

I was dumbfounded how everyone was so wonderfully heat tolerant and sun worshipping. This went for adulthood as well. While I had a good nightlife and winter activity schedule, I was sick all summer, staying in the air conditioning and avoiding the sun as much as possible. A coworker called me “mental” because I kept asking if we could turn the heat down in the office. A date called me “selfish” and “embarrassing” at a barbecue because I demanded to leave after I’d thrown up and realized I was urinating blood. My pay was deducted at one job for my refusing to attend the company picnic, after I explained to the HR department that I can’t be outside in the August sun for hours like that and begged to be excused.

I didn’t have a diagnosis. But I’d tell people how I felt. I’d ask for help. I was never met with any sympathy. No one ever just believed me, or made any kind of effort to understand, or help, or at least accommodate.

You can imagine what this did to me emotionally. I grew up with the same lessons enforced again and again my entire life: no one believed me. No one listened to me. No one cared. I was different from everyone. Everyone was better than I was, stronger than I was. I loved winter and snow and cold, and everyone made sure I knew how stupid that was and how crazy I was. Being honest and admitting what I felt or needed only got me teased and excluded. I was my best when it was cold and dark out. I must be a freak.

Bear, does my history give you any kind of perspective on your wife? She may not even understand yet that a great deal of the emotions she’s dealt with over her life are a result of being mistreated because of things out of her control. Light sensitivity is only one of the symptoms. Pain is another. Compromised metabolism is a big one; sufferers can eat great and live active lives and still be resistant to weight loss.

When your wife is shutting you out because she feels isolated, when she’s thinking no one understands because no one ever has, when she doesn’t communicate because life has shown her that only gets her punished, she’s not responding to you specifically. She’s responding the way her life has taught her to respond.

My point is, you’re not just dealing with a medical thing or a symptom. Looking it up online or offering advice may not be helpful. Don’t fret though, the great thing about learned behavior is that it can always be unlearned. She can learn to hear you. You just have to speak her language.

If you and I were someplace and I got hot, you wouldn’t just be dealing with my photosensitivity. You’d be dealing with how the world has treated me for 45 years over that symptom. You’d be dealing with all the reactions and non-reactions I’m used to, and the toll they’ve taken.

Don’t rationalize, or try to fix, or dismiss. Bear13 if you’re doing any of that as well intended as you may be, it’s not going to help. If she says she’s hot for example, don’t tell her to take off her sweater. Don’t tell her the temperature and explain that it’s not hot. Don’t question her or tell her to call the doctor because there must be something they can do. Don’t make her feel like a freak, like the only person who could possibly feel that way.

Instead of reacting to the symptom, react to the emotion. Think about what she’s been through over her lifetime because of that symptom.

She may not be cognizant of this. Fortunately, she has you.

Personally, I would love for once to announce that I’m hot and to hear someone say, “Yeah, let’s turn the air conditioner up.” Or “Yeah, let’s get out of here.”

The “yeah” would mean the world to me. It doesn’t mean that person is hot too. It means: Yeah, I heard you. Yeah, I understand. Yeah, it sucks to feel too hot. Yeah, you’re not a freak. Yeah, I’m on your side.

You’re going to have to relate the essence of what I’m saying to her specific issues. Then just give it time to take root. Judging from your awesome email, I am sure you can do this.

Choose the best answer to complete this sentence:

If someone says they're hot, cold, tired or hurting in a situation where I don't feel that way at all, I :

  • Assume they're going through something and try to be understanding.
  • Say something like, "You're hot? Are you insane? It's 78 degrees! It's beautiful!" to make them feel wrong.
  • Don't care, I can tell who's really going through something and who's just nuts for not feeling great in 78 degree weather.
  • Am unaware of my behavior. I hadn't thought about this. I don't know what I tend to do.
  • Am usually the one in pain or something. I'm the one feeling stupid and embarrassed by everyone I admit it to.
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1 comment

larcaustin46 profile image

larcaustin46 4 years ago from Austin, TX

This is a beautiful piece that really captures the emotions of dealing with a chronic auto-immune disorder. Thanks for sharing it with us!

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