Poor guys. I give them short shrift, when I write about SLE. Using the female pronouns "she" and "her" I forget that men can also suffer from this disease.
And, Lord help me for making this comment, it's been my experience in seeing male lupus patients, they REALLY get it bad. Why is this?
I have personally known two men who have lupus, and they both are not doing well at the moment. Let me tell you about one of them: "Joe" came in from playing golf one day, sunburned as a lobster. He soon began to exhibit symptoms that sent him to the emergency room. Barely lucid, he answered their questions and he was admitted. Test after test, all the while he was suffering from severe sunburn, itching and a general feeling of overwhelming fatigue.
He was lucky. He was diagnosed while still in the hospital as having SLE -- Lupus. Treatment started immediately. Even so, he lost his job because he couldn't function physically or mentally. He's not the same man he used to be. His wife is at a loss as to how her husband could go out one day fully healthy and a week later be incapacitated.
Now maybe he had exhibited some symptoms before that incident. Maybe he hadn't felt fully well for a while, with some aches and pains, but had brushed them off, as most of us would do. Loathe to go to the doctor, he pushed everything away, until his body broke down.
I'm not saying the outcome would have been any different had he gone to the doctor for tests for his somewhat vague symptoms. But I'm betting that he, being of the male persuasion, would have received more rigorous, more serious investigation and probably diagnosed sooner. Then he might not have gone out in the blazing sun to play a round of golf.
I'm just sayin'......
I'll try to keep in mind this isn't JUST a woman's disease.
<Lupus
Bless you, Marilyn for this post. I am a man with moderate Systemic Lupus who also has the Discoid type and Central Nervous System Lupus, plus 2 other autoimmune diseases (severe Rheumatoid Arthritis (RA) and Sjogrens) that were diagnosed after the Lupus. And, officially diagnosing Lupus took years. I am treatment resistant, at least to date. I will never-ever give up hope. Yet, the progression of these autoimmune diseases have escalated in the past several years and my options are becoming very slim. This is not uncommon with both genders, yet it seems to me that men have a far greater resistance to treatment than women. I have discovered no research on this, yet there remains so very little research on men with Lupus, etc. that it isn't surprising. Yet we are here and suffering just as women are. Only recently has there been an awareness push for more solid research for men. There are so few gender differences with the onset, active disease and prognosis, I believe that eventually, we will begin to see more and more research on men only and I hope to see research including both men and women together, making the appropriate gender differences plugged into the research. Go Willing!
ReplyDeleteI have been disabled for 9 yrs next month and Joe's experience is similar to mine as I was at work and dropped to the floor very ill. I had pushed myself too far and was in such denial. That one day changed my life forever. It was the last day I have been medically capable of working, after a 30+ yr. career in the hotel business as a General Manager/Management Trainer and simultaneously for the last 15 yrs, as an Interfaith Minister.
The punch of men with Lupus (other autoimmune diseases) and the prognosis does seem to be very difficult for men, in general, as research and my personal experience has proven. That is not to say that women don't have it severely too. They do, yet statistically, more men than women tend to a heavier punch from the onset. This could be an incorrect finding for many reasons as men have a tendancy to have longer and more involved denial of symptoms and in surrendering to the social male, macho imagine that we were taught from the beginning of our cognitive understanding.
Marilyn, you are exactly right. Part of the problem, although some is physio-biological in nature, is because men have a 'shame' factor for complaining or being ill. We are to be tough, stoic, manly and take care of our families and the entire world... or so it feels, at times. Especially those of my age group and older, have a heavy dosage of these social demands. Our expression of feelings is differing only because of the way we are taught to commuicate our emotions. Otherwise, I see no difference.
Denial is such a self-destructive practice and we all do it to some degree or another, yet when social constraints, the demands of males (and more and more females today) to care for our families, honestly, can no longer be tolerated. Something has to give and for too many of us, our health is placed in grave danger because of the unrealistic demands of both genders in our culture.
Sorry, I didn't mean to get on my soap-box. I just have a passion to advocate for those of us with devastating chronic illnesses/pain and a heightened awareness that men are being seen even less than women with this devastating disease; Lupus.
Thank you so much, Marilyn for advocating for us all!
We are One United Voice and we are making a difference every single day!
Bless You! You are greatly appreciated!
Anthony
I'm so sorry I didn't notice your post until now. Part of the lupus brain fog, I suppose.....
ReplyDeleteI'd like to recommend a lupus support group if there is one in your area. Go to Lupus.org to see a list of support groups.
I also am a member of a yahoo group for lupus, called Lupies. Go to yahoo groups, and look for Lupies. We are supportive and have a wealth of information and experience for everybody. Try it.
I hope you are getting good treatment from a good rheumatologist.
Again, I'm sorry I have been so neglectful of any comments....I guess I could say I have a medical excuse~!!