Lupus Is Going Down

Helping You Live Well With Lupus

Can men have lupus? It’s a question I get every day. When I go to answer, I first want to rant. But, then I calm down and realize that this question is due to a lack of understanding of the disease. So, I wrote this post to answer the question in hopes of educating others about the disease. Also, maybe I won’t get asked this as much anymore (here’s hoping).

Can men have lupus?

Can Men Have Lupus? The Answer is Yes

That’s the simple answer. But, to be fair, more information is needed than that. While lupus affects people of all ages, races, and sex, it is rare for a man to have lupus. Rare- yet a reality.

Let’s take a look at the statistics for a moment. Around 1.5 million people in the U.S. have been diagnosed with lupus. Of those, a little over 1 million have been diagnosed with systemic lupus erythamatosus. And, 90% of those are women.

That means that only around 150,000 men (depending on whose numbers you use) have been diagnosed with lupus in the U.S. Among these men, most were diagnosed at a later age, which may be due in part to a delayed diagnosis according to one study. Incidentally, included in this number is celebrity Nick Cannon (Source).

And, yes, I’m included in that number. I was diagnosed at an early age- early teens. Yes, that’s an early age, but it’s the truth. My lupus was active for a few years, and then I went into a long remission. I mean a really long remission- 18 years!

Then, in my late 30s I had hernia surgical mesh implanted, and next thing you know, I relapsed. It’s been over 5 years now, and my lupus is worse than it’s ever been. So long story short, men can have lupus. I have lupus (and I’ve only recently started admitting it).

The Difference Between Men and Women With Lupus

I’m going to start off by contradicting myself a little. There is no major difference between men and women when it comes to lupus. The disease acts the same way in men as it does women. And, it’s treated the same way. Okay, now that I’ve said that, let me say that there are few smaller differences.

First of all, some common symptoms are more pronounced in men than in women according to scientific research (I’m not a doctor. I’m a man diagnosed with lupus that has done some homework). For example, some studies suggest that kidney disease is more common in men. The same is true with skin involvement, pleurisy, heart attacks and strokes, lupus anticoagulant, and seizures.

If you want to know more about common lupus symptoms, please see my post– 6 Warning Signs for Lupus: Less Common Ones. In this post, I detail 6 lupus symptoms that aren’t discussed as much.

As for me, I know this to be true. When I was first diagnosed, it was due to my having a seizure in class. When my mother took me to a specialist, the specialist hospitalized me for further tests. Once at the hospital, the doctors started focusing on other symptoms. By the time, I left the hospital, I was introduced to lupus.

Fast forward to my relapse. Once again, I was in a classroom, but this time I was the teacher. I suffered a stroke in the middle of teaching a lesson one day. And like that, my lupus was back. Since then, my symptoms have increased in both number and severity.

The Severity

As I have come to find out, the severity of my lupus symptoms is common among men. Before I say anything else, let me say that I’m not downplaying the effects of lupus on women. I’m just sharing what I have come to learn about lupus and men as I have traveled my own journey with lupus.

Within the research, one study being conducted by the Department of Veterans Affairs, lupus appears to be more aggressive in men. For one thing, lupus in men exhibits a higher disease activity. The study concluded that men with lupus reported notlupus and men only more hospital stays, but also longer hospital stays.

Even more, a study coming out of a university in Columbia reported lupus in men creating increased organ damage. This is especially true of the kidneys. Combine this with the increase in heart attacks and strokes among men with lupus, it’s no wonder that the survival rate for men with lupus is lower.

The Perception

So as you can see, it’s a common misconception that lupus only affects women. Unfortunately, this misconception has created a certain perception of men with lupus. I know that this negative perception exists with everyone diagnosed with lupus. Yet, I can only speak from my experience.

In the beginning of this post, I mentioned how many times I have been asked, “Can men have lupus?” It’s too many times to count, but it doesn’t even compare to the number of times I have heard another question that troubles me even more.

And that is, “Lupus- isn’t that a woman’s disease?” When I hear that, or any other disparaging comment about me having lupus, I feel like people don’t believe me when I say I have lupus. Honestly, I’m sometimes thankful for the skin issues on my face (when I have them) because then I have something to point to and say, “See, it’s real!”

Even worse, is the sense of failure I sometimes feel. At times, I feel as if I let people down. I let my boss down because I have to miss another day of work because I’m sick. I feel like I let my kids down because I don’t feel up to doing something with them. Don’t get me started on my friends that I can’t go hunting with because it hurts too bad to be out in the cold or damp.

Maybe this perception has more to do with antiquated notions of what it means to be a man. I don’t know. I just know that there is a lack of male voice when it comes to lupus. Even researchers discuss a lack of male representation in study participants. Other men with lupus, like Andres Kemp, have discussed a lack of male representation in the lupus support community (Source).

Ultimately, all of these perceptions and notions lead to a view that a man with lupus is, well, less of a man. As a result, it only makes the battle with lupus more intense.

So, The Answer Is Not So Simple

Can a man have lupus? Yes.

But maybe that’s not even the question that should be asked. Maybe you, should be asking, “How does lupus affect you as a man?” Or, even better, “How are you doing as a man with lupus?”

For me, the best question to ask a man with lupus is, “What can I do to help?” The answer to that question is actually simple. You can promote lupus awareness. You can provide support and understanding to someone with lupus, whether they or a man or a woman.

I hope you liked my post. If so, please share it on social media.

If you have any comments or questions, please share them with me. I will definitely respond. I want to start a discussion on the issue. Again, thanks for reading.

Men can have lupus

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17 thoughts on “Can Men Have Lupus? An Insider’s Answer

  1. Thank you for this article. I knew that men could have lupus, but to be honest I thought it was less common than it is – 10% of cases is significant. I agree with you that this comes down to awareness, so I’m going to share what I learned here with my friends and family. I wish you all the best in your battle – stay strong. Thanks again.

    1. Thank you. Yes, more men are being diagnosed with lupus in recent years. This may have to do with more information coming out concerning lupus in men. Or, it may have to do with men waiting longer to address their symptoms, so that there is a delay in diagnosis until now. Honestly, this is an area that needs more research. Again, thank you for your well wishes and for the comment. And, yes, please share the information. The more awareness that is brought onto the situation, the more people will want to conduct lupus studies, which in turn will help lupus patients. 

  2. Thank you for this article. I knew that men could have lupus, but to be honest I thought it was less common than it is – 10% of cases is significant. I agree with you that this comes down to awareness, so I’m going to share what I learned here with my friends and family. I wish you all the best in your battle – stay strong. Thanks again.

  3. This is a disease that affects 90% more women than men,and the symptoms are often mistaken, for other ailments,a definitive symptom, is the rash that appears on both cheeks.

    It seems to produce kidney disease, heart attacks,and strokes,and seizures sometimes mistaken for epilepsy.

    Very often sufferers can go into remission, spontaneously for eighteen years, and then the disease strikes again,a strange thing is that,the attacks can be in a totally different area,from the previous time,perhaps a heart attack, or maybe just a feeling of weakness, with muscle and joint pain.

    Victims often feel a sense of not being good enough,missing days off work,not being able to do what others do,not feeling up to playing with their children,not being able to do strenuous pursuits,like running or hiking,or hunting.

    .  

  4. You have an extremely insightful website.  Think about it: you have a place for men to come with valuable information on Lupus. I am sure they will feel it’s a GOD Send.  The bread crumb banner is helpful when navigating websites; it shows you where you are.  Do you think it would be good to move “About Chris” next to Home in the menu?

    Relative to the site, it is crisp and well organized. Nice background pic too.  

    Thank you for sharing.

    1. Thank you. When I was planning this site, I was thinking about what I needed as a man with lupus. I wanted to tackle it from that perspective. But, in doing so, I know that I will be helping women with lupus, as well because the symptoms and treatment are the same for both men and women. Also, I wanted to increase lupus awareness because of the faulty perceptions and negative reactions I have received from others. As for the About Chris suggestion, thank you for that. It’s a great idea and will do so. Again, thank you. 

  5. I can feel you poured your heart into writing this article. I am really thankful for your enlightening information about Lupus.

    And let people know it is possible that men can get them as well. My uncle from 50 years old has it, and I know all about, because we are close.

    He explained to me how he feels and what’s bothering him the most. THanks.

    1. I’m glad your uncle talks to you about his lupus. It’s important for him to share, so that you and others around you can understand what it’s like for him. That’s the hardest part, for me, as a man- talking about my disease. For so long, men have been taught that talking about illness is a weakness. Yet, it’s really not. It’s part of the healing process. Thank you for sharing that. 

  6. Hi Chris, thank you for this honest and frank account of your ongoing journey with this awful condition and for speaking so candidly of the frustrations you have with the perceptions people have of Lupus.  I had an aunt who suffered with Lupus, but I was quite young at the time and didn’t really understand the implications of the condition.  As a youngster I merely  thought it was a skin condition but I guess being so young I was shielded by my parents from the harsher details of what it entails.  Yes, my aunt was a woman (obviously) but I hadn’t realised, until today, that it is a mainly female complaint.  What I didn’t know either therefore is that when men do get it, the symptoms and complications are so much more acute.  

    I really do applaud you for bringing this awareness to more men.  It strikes me that this is a condition where doctors may not initially even make the connection between symptoms and potential onset of Lupus in boys and young men so by raising awareness like this you could be helping people find a diagnosis sooner or even prompt them to ask their doctor if they think their symptoms could possibly be Lupus.

    I wish you all the best with your condition and hope that in raising awareness of Lupus and how it affects both men and women you will bring a greater understanding amongst the public.

    1. Thank you for your well thought out comment. Yes, I want to be honest about my experience with lupus. I feel it’s the only way to raise awareness. And yes, I feel that sometimes the connection between the symptoms within males is not made. Honestly, though, this may be partly attributed to a lack of understanding on the patient’s part. Since the misconception exists, why would a man or the parent’s of a boy even consider the concept of lupus if it’s considered by most to be a women’s health issue? That’s why I wrote the post- to let others know that it can and does affect men, too. 

  7. More men should be aware of what Lupus is and what its symptoms are. I heard about Lupus many years ago and I always thought it was a rare for anyone to have it let alone men. It’s good that you wrote this up and hopefully more people learn more about the disease. Until I read this, I wouldn’t have guessed that Lupus possibly is more aggressive in men than women. More research is needed into Lupus in general. 

    1. I totally agree, and I am trying to increase lupus awareness among men. It helps that there are celebrity lupus warriors such as Nick Cannon, but I feel more needs to be done. I also feel that more support groups for men need to be started, but it becomes an issue of numbers and locale. Since the numbers are low, there may not be enough men with lupus in a certain area. So, an online forum for men with lupus may be a better alternative. It’s something I’m looking into. 

  8. I have seen male with lupus. Many people that I have seen with lupus normally carry it for long. Infact it got to a time when asked them if it is curable. Most of the victims find it very difficult to answer because their many attempts that proved abortive. Thanks for this intensive analysis about lupus. Did you know any method of treatment that can cure lupus?

    1. No, there is no cure for lupus. There are only treatments for the symptoms and methods for preventing organ damage. Yes, lupus is a long-term disease, but it can go into remission. Most lupus patients that enter into remission may see a remission, or a better term would be quiescent (or inactivity), of less than 10 years. Thank you for your question.

  9. When I first became aware of Lupus was in the spring of 1996 after I joined a Nutritional Supplement company. In those early years, it mostly appeared in women, but there were also men and children with it. It seems that horror stories always came from women. I was to find over the next few years that this was not the case. 

    I noticed I was hearing stories from men also with this “dis-ease” but because they were ‘Men’ they appeared to not elaborate about it the way that women did. But they all had the same “dis-ease”.

    My opinions of it soon changed when I was able to see some “facts” about Lupus that others were not commenting about. The “facts” being that treatment was always based on a pharmacological product for symptoms and nothing was being done to Cure the Nutritional Deficiencies that brought the “dis-ease” into being. 

    1. Yes, diet is important, but there’s no definitive research as to the cause of lupus. So far, it comes down to genetic disposition, hormones, and environment. Thus, most researchers see it as a combination of what’s inside and outside the body. As for diet, there are definitely certain foods to avoid and certain foods to eat. Following such guidelines help alleviate the symptoms. As for me, I’ve always had a healthy diet for health and sports training reasons. Since I have been diagnosed, I have become even more conscientious of my eating habits. I fully support a holistic approach to treating my lupus symptoms. 

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