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Story by Jody Breen

Lupus, Man’s View

I was asked to write about living with lupus from a male’s perspective. I’ll try to summarize it up in a “Top Five Things I’ve Learned” format. Which in actual fact is what all men should learn, lupus or otherwise.

Always treat your wife or mate like you are going to be ill in the future.

This way you won’t have to deal with guilt of treating them badly in the past and having them stick with you and support you unconditionally if you get sick now. I must have done badly here for I still feel a sense of the stupidity in my bad thinking and handling of situations back then. From what I’ve seen this is what woman do instinctively when a mate gets sick. Men seem to instinctively run or stay and make their sick mate feel guilty for being ill. I don’t get along with too many men because of the way they treat their mates. I’m not perfect but I don’t disrespect my wife to her face or behind her back and I don’t brag of straying because I never have and never will.

Take care of your diet through educating yourself and knowing you body

This is a great tip that my wonderful wife has ‘trained’ me to do. A good rule of thumb I use here is always read products labels and if an ingredient takes more then twice to pronounce it, you probably don’t want to put it in your body. Again, by educating yourself you will recognize ‘good’ unpronounceable names. Another rule I try to use here is ‘if you feed yourself garbage you’ll probably feel like garbage’. Everyone knows what’s good and what’s bad but no one seems to have ‘the time’ to eat healthy. And rightly so. It does take more time to eat healthy but we have to figure out what’s more important, less TV and less clogged arteries or more fast food and drinking nights out with boys.

Seek psychological help very early in diagnosis.

This for a man is very, very hard. It’s like the asking for directions situation, but multiply by 100. But what I have learned through therapy and the right books being given to me to read at the right time has helped me learn that bad thinking CAN make feeling bad worse. Educating myself here has enabled me to better deal with the pains and losses associated with being sick. My pain levels haven’t changed but the way I think, deal and live with the pain has changed immensely. Now I recommend seeing a psychologist to anyone. What possible harm could come by talking about what’s bothering you or what your fears are except actually having to deal with them head on. I think that if everyone sought counseling of some sort that we would be better prepared for illness or any situation. This may unload some of the pressure on the overtaxed health system so would be worth while for the system to look into for coverage instead of cuts.

Join or create your support system.

This will help you relate to others in a support group setting (male or female) and it always helps to have a few loyal family members to stick up for you when you can’t make it to family functions. I know a support group isn’t the manly think but listen up all men! If you don’t support yourself in this sea of life, you WILL sink eventually. Plus it is sooo true that what you reap you sow. If you surround people around you in a positive way it can cause a ripple affect. Let me explain an experiment I did with my wife on a whim in the car one day in traffic. I said to Jen “watch this” and started the experiment by letting in a gridlock car in front of me by gesturing nicely. Yes, all 5 fingers together in a calm motion to go ahead of me. That person waved graciously and we could see that they were happy. Now they were in a good mood and within 10 minutes of others letting in others and jockeying positions I had totally surrounded myself with people that felt “important’. Now the people behind all this might not of been to happy but after all, they would only be arriving 20/30 seconds later to their destination. My experiment has works every time I’ve tried it and I still have yet to experience the wrath of horns and people yelling out their windows at me as they pass because I’ve broken down. I will deal with this with the 1 finger gesture when the time comes. (Just kidding, well…) I have had the same luck in running my support group. With the rewards of helping people and creating a support system I hope to keep heading forward with momentum from my new family to help the future members of my new family.

Stop being “a man” and just start being “human”.

Showing emotion or being human is hard for most men to grasp mainly due to bad programming growing up. This comes mostly from our fathers and a lot from the school yard too. Can’t let down your guard, can’t let them see you cry. Boys get older and do exactly what they’ve learned. Bottle everything up or you’re showing you’re weak.. But bottling up crap from the past and not talking about them tend to seep out your pores as other symptoms. It is in this conclusion that I say that because of all our bad experiences that we hang on to growing up, it seems as adults we are all functioning psychotics just waiting for an episode. I think the instances of violent crimes and road rage can attest to that. It is my observation that women tend to seek help by means of medical professionals and men seek help by going out with boys more then they should, drinking and doing drugs to bury what’s bothering them deeper. Sorry, just my observation from talking to many. (Yes, from both sexes).

Giving of ourselves is the best thing we can do for our conscience as humans, not just men. But all this plays on one theory that I’ve been taught and that is our own self-talk. What we tell ourselves directly affects how we react to others and the world. Negative self-talk is where it starts. After all if it’s love that makes the world go ‘round, then we have to start with loving ourselves first don’t we?

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