Lupus and Relationships

Ƹ̵Ӝ̵̨̄Ʒ Lupies’ Perspective Ƹ̵Ӝ̵̨̄Ʒ

So, in all my previous articles, I’ve always blabbed about my thoughts and experiences and such, but this one is a little different. On the topic of Lupus and relationships, every Lupie has a different perspective. Therefore, I wanted to capture the different points of view, interpret the findings then share them with you, in the hope that it might help and educate, even in a small way. To do so, I sent out questions to Lupies and their responses have written this article, with me taking on the role of narrator. Here’s a little “som’n som’n” about Lupus and relationships from us Lupies:

Too often, many persons have failed to come to the truth that the effects of Lupus are not limited to the physical. Undoubtedly, Lupus affects every aspect, crease, crevice and corner of the lives of its survivors… not victims. Its impacts are reflected physically, socially, spiritually, emotionally, psychologically and all the other “ally’s” known to man

The million dollar question now becomes: “Does Lupus affect relationships as well?” Oh yes it does. Personally, I can testify to this but upon further research, I have discovered that this claim is widely supported in the Lupus population. However, the nature and extent of the effects differ from person to person and from situation to situation.

In some cases, Lupus has impacted the decision to pursue a relationship. In a previous article, I stated that while persons might not have a problem with the “idea” of having a partner with Lupus, they sometimes do not know how to handle the “reality” where they have to deal with it on a daily basis. Being hurt by persons who walked away because of Lupus is not uncommon. While many share the same experience, one sister sums it up all in one sentence.

“I was in a relationship a few years ago when I got diagnosed, with someone who left me because of my illness.”

Such heartbreaking experiences have killed the hope of having a relationship for some Lupies. On the other hand, others have decided to jump over that hurdle, and again, launch into the deep, living a dream for those who may be too hurt to do it for themselves.

The first stop, which is often disclosure, can be nerve-racking because it can impact the onset or the continuation relationships. For some, admitting to having Lupus was never an issue, since diagnosis came in the midst of the relationship. This was the case for the following two Lupies:

“I was older and already in an established relationship when I got Lupus. He has seen everything this disease has thrown at me. I was worried initially that he would leave me, but he has not.”

“Well, my husband was OK with that. We are together no matter what… It took years to get diagnosed. We continued our lives as usual. However, we deal with it the best we can.”

For others, admitting to having Lupus is a very huge milestone to get past. According to three Lupies:

“I find it really hard to tell someone, anyone, for that matter… I was worried about being treated differently, of being judged, and of what would result. But when it is someone you care for or love it is even more frightening as you are afraid they may not love you BECAUSE of lupus, or because they do not want the “burden” of it (don’t you wish we could CHOOSE to have the “burden” of it placed upon our shoulders too…LOL)”

“Well, whenever I meet new persons and we seem to be getting close, I see the need to mention some personal aspects of my life…then I listen keenly to their reaction. The way they react influences my feelings towards mentioning further about lupus and telling them that I have lupus. It takes a lot out of me; simply because I’m afraid they will not talk to me, judge me or feel pity towards me.”

“I only tell them IF it appears to be love (factually! Not from the biochemical place of insanity called infatuation.)”

These responses maybe so common because of the previous reactions Lupies have gotten after they decided to be open about having this disease. There are instances where the bulk of the responses has been negative, to the point of grave lack of sensitivity. One sister states:

“Some people don’t care; others don’t know what it is and feel that it meansnothing. Some say, “Well, it’s not Cancer.””

There are cases too where the responses have been a mixture of both negative and positive.

“I have had a wide variety of responses from those are not accepting and do not want to understand, to those that have really not thought twice about it and treat me the same they did prior to knowing, and care more for me because of it and despite it.”

To get in a little deeper now to the meat of the matter, there are indeed instances where, upon learning that the loved one has Lupus and what the actuality is like, the spouse decides to stick it out. The success of a relationship is based on constant hard work… and sometimes Lupus makes it a whole lot worse. For two sisters: 

“My husband knows I have Lupus, but really has no idea. I’ve been fatigued for as long as we’ve been together so that is the norm to him. He lives with chaos and cobwebs because it’s all he’s known… He’s not good with the caring thing though and I have to work off my own flares, no tea, toast and sympathy is ever on offer.”

“It affects me when I am having a flare. I only want to sleep and I don’t feel like a human being. Fatigue is awful and I feel my life is being wasted in bed while healthy people are having a great time. I mean, my husband and I can’t do things because I’m out of it.”

Even though there are no fairy tales in reality, and all relationships have their problems, there have been cases where Lupus, try as it may, is no competition for the love that fights its way through. 

“My current BF was so embracing from the moment I told him I have Lupus. He only wanted to help make my life better and easier. He wanted to know how he could help, and began researching to educate himself a bit more on it, so that he could be there for me. He has been through a lot with me even prior to dating. With losing my hair and all the ups and downs lupus can throw your way, he has never once gotten frustrated and taken it out on me or lupus, but rather has stood by me and offered love and encouragement.”

“Telling my husband was not difficult because we were best friends before we started dating. I, however, felt that with all the challenges of Lupus I needed to end the relationship. He would have none of it and for 3 years we struggled because all I could see was all the things he would be giving up; a normal life with a chronically sick wife, with no prospect of having children, I would lose my hair, features and my exact words to him were, “I would swell up like a mudfish!” With all that said, he made me promised that I would marry him… mudfish, no hair, hospital bed and all…. Eleven years and 2 kids later, I give God thanks for all His blessings.”

The latter story brings me to a point which is all too familiar. Sometimes it is not the partner who walks away but the Lupies who give up or push away their loved ones. We get insecure and the reality that we are pulling someone we love into the stress, pain and sometimes disappointment that come along with Lupus, may cause us to be reluctant to be in relationship.  However, if someone is willing to look past Lupus to find the person within and love that person, we should not deny ourselves of that chance.

“It was the only time I had made up my mind to give up. He had seen me at my best and at my worst, but I decided I’d do him justice. I thought he didn’t know what he was getting himself into and that he was selling himself short. Just before I was about to break the news to him, he kissed me on the forehead and looked into my eyes.

He said, “I know I’ve said it a million times but you have the most beautiful eyes I have ever seen… You are my story.”I knew then and there that it was not only about me and what I thought. It was too late. I had already embarked on a powerful and dramatic journey… with him.”

There are even times when the partner, knows how to handle the situation of being with a Lupie so well that he or she actually uses humor to shed some light on something that is so often overpowered by darkness… Even though the humor sometimes drives us crazy.

“When I stand my ground on something and he disagrees, HE pulls the Lupie card! He will say, “Oh honey, you are just having a bit of brain fog. We will discuss it when your head is clear.” Boy does that get me mad. And I can’t fight it even though I know it isn’t true because the more mad I get the more he feels he is right…arghhhh!”

In closing, I will leave my conclusions with you:  Despite the fact that Lupus affects relationships, it does not determine its outcome. The individuals involved do. I have read some amazingly beautiful stories but also, some very heartbreaking ones. This reality has driven me to delve beneath the surface of this issue and question whether it is in fact “Lupus” that is the issue or the persons involved. Yes, Lupus is a pain.  However, the nature of the impact, whether negative or positive, and the extent of such an impact, is largely dependent on the persons involved and their attitude, personality and the degree to which love is present.

Not the love that is great when all is well or the love that does not allow room for frustrations and limitations. Not the Love that is conditional. 

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.” ~ 1Corinthians 13 : 4-8

If this is the criteria by which love is defined, doesn’t it bring into question if what we are experiencing is infact LOVE? Love is not something we say, it is something we do. Thus, if it looks like a duck, quacks like a duck and walks like a duck, it is a duck. If it does not look like a duck, doesn’t quack like a duck or walk like a duck… Hey! Probably it is NOT a duck.

Live. Love. Laugh. Lupus.

1. For all those who willingly shared your stories, words are inadequate to express my gratitude. This could not have been possible without you!

Shoyea-Gaye Grant ©

First published in The Lupus Magazine