I’ve been on a mission of late to try to pinpoint “when” SLE ( Systemic lupus erythematosus ) entered my life. Why I “got” SLE. Why, in the twelve years I’ve dealt with it I’ve had serious flares and symptoms, and other times I’ve managed my symptoms enough to get some things accomplished.

“Recently a freak snow storm hit and we were all stranded more or less and stuck inside with hours of either boring TV, a book we’ve already read or best for me, our uninterrupted thoughts.”

I never truly connected the affect my personal relationships had on my illness. Although those close to me, family, friends and even my physician who’d known me for years could see the correlation, see me go “down hill,” get worse and eventually just wither away to nothing could see it clearly. They tried to help in a kind, “don’t get in her business” way because I was always this strong willed, accomplished “do the right thing” person.

Snow Days

Snow Days

I was common sense smart (I thought) and be good to others was my mantra. Everyone figured I’d realize that outside situations weren’t good for me. But I didn’t. I entered those relationships for love and a place to belong because I was told how much I was loved and wanted, I stayed because I believed that even when the situation turned upside down and by then I was weak with my illness. The weakness and fatigue took away my ability to stand up for myself and I became a people pleasing machine. That’s the thing about people who’ve known you forever. Especially good friends. When you move away and only see them occasionally the changes in you are alarming. It’s factual information. You can’t hide it. It’s not rumor or gossip. Your doctor has a record of your blood tests, state of mind, symptoms. Your family and friends have you standing in front of them, a shadow of the person you once were.  How frightening, I would learn later, it must have been for the people in my life who knew me best and loved me. When I’d come back for visits to see me withering away. They would try to intervene, or talk to me and I’d beg them not to worry, I had everything handled. I was doing better. It’s all good. Please don’t worry.

“When apologies come from the person you are fighting to stay with. When good times occur, honest attempts at doing fun things and most importantly, the words, “I’m sorry. I understand what you are saying. I’m dedicated to doing right.” Then you KNOW there’s hope and you believe it will get better!”

Facts don’t lie. But you can lie to yourself because you are just SO ILL it’s easier not to state the obvious and just try to fix it, but rather stay in the situation that is the worse situation any person with ANY illness should find themselves in much less stay in.

My symptoms of Systemic lupus erythematosus didn’t manifest themselves until after I entered into a situation that would prove to be a nitemare with occasional glimpses of good times, enough to keep me hanging on. I don’t want to name names, or blame. I made the decisions and I STAYED. But how it turned my world upside down would have lasting effects on me with my Lupus and me in general. I learned early into this relationship that I had malignant melanoma as well. I had surgery and it was cured. But my SLE marched forward.



Without going into detail of the last 13 years of my life sufficie to say, I’ve learned through counseling, time alone and away from situations, and most importantly, time in prayer and teachings that I will NEVERTHELESS get better, much less well enough to do the things required TO get better as long as I continue repeatedly doing and living the way I have, I will always be in a confused, frustrated, stressed state which has only pushed my SLE to major proportions.

Finally, after being absolutely at my wits end with my illness, my relationships, my struggles that nobody I’ve ever known has had this much struggle with no end in sight. I MUST reevaluate my life to determine how I got here and what I must do to dig my way out and live with SLE and life in general without this impending doom, confusion, sadness and frustration ALONE. So through counseling, keeping a journal and reading through it and a sit down “talking to” by those I respect that it all came into focus. The hard reality. Most importantly, my personal relationship with God. How sudden events or signs would appear that would open my eyes and give me five minutes of energy to fight back. That no matter how weak and sick I was, I still knew how I was being treated was so wrong. I had only myself to blame for this. To get respect you must respect yourself.

Sweeping things under the rug is a very dangerous thing. The time will come when you will have to go and face your problem head on.  Acting as if I liked something I actually hated and despised after awhile but couldn’t talk about it was poisoning me. Because talking about it caused great stress. I tried to talk about it but the stress and anger thrown my way just made me sicker. It was manipulation and control in the worse way. I was needing to go speak with someone openly and tell them how their actions affected me, but it scared me, I couldn’t. I was in a weakened state due to my illness and my fear of being made to feel like a burden engulfed me. But I starting praying and felt God was wanting me to get ready, at least mentally, to be willing to deal with things I may need to deal with in order to get well. I have learned the hard way that sometimes you really can’t get well without this. The difference between little insignificant disagreements vs. major disagreements is in the proof of how deeply they hurt. How you couldn’t never say or do that to someone much less someone you loved, much less someone you loved who is fighting a chronic illness was so foreign to me. I just fell into this surreal, “did I just hear that?” mindset, too weak to fight it. But inside my body stress met up with SLE and they had a hay day attacking me. It’s crazy how we get into these unhealthy scenarios when we are sick and not thinking clearly or weak. Here I am trying to protect him, and he never protected me.

When apologies come. When good times occur, honest attempts at doing fun things and most importantly, the words, “I’m sorry. I understand what you are saying. I’m dedicated to doing right.” Then you KNOW there’s hope and you believe it will get better! You go to sleep that night thanking God with renewed hope for your future and your health. But in a matter of days, all goes back to the old, destructive routine. It’s this up and down roller coaster that SLE loves.

“It’s like lupus loves the rides and the games at the carnival because that’s when it can really wage it’s war on you.”

Don’t let somebody else steal your life because you’re afraid to confront them and say, you really have no right to act this way to me and I’m not going to continue to allow you to do it.

In the matter of chronic illness where you just can’t catch a break. Where stress is a contributing factor to your inability to gain ground against your illness. It is well known that stress plays a significant role in Lupus. Sweeping things under the rug is a very dangerous thing. The time will come when you will have to go and face your problem head on. You can’t run from things or hide from things and ever really get well. Whether it’s a sin in your life you need to deal openly with with God, make right or restitution with, or somebody in your life has really mistreated you and their living in this fantasy land that it really wasn’t that big a deal, the time has gone by to the point it’s softened their recollection of events and they go back to old ways. But for their sake, in a loving way, you must sit down and confront them and tell them what they did to you or do to you and how it made/makes you feel. The fear of doing so will lessen, and the absolute necessity to do so will take over. I have learned the hard way that sometimes you really can’t get well without this. God doesn’t intend for us to always struggle. Sometimes we get a reprieve from our illness and the weakened state we live in. And your life comes into focus.

It’s time. It’s time to deal with things. Because if you don’t deal with them, they deal with you. They steal your joy. They get more deeply rooted on the inside of you and it causes deep, deep problems. God will give you the strength and timing to go back and deal with these things so you can finally get well. No one has the right to mistreat you when you are down, to manipulate your situation to their advantage so that they don’t have to feel any shame or guilt. To turn mistreatment around and make you feel you caused your own sadness or frustration, or even illness. To make excuses for their behaviors that hurt us to the core. When God feels you are strong enough, It’s like a light is turned on and you see it all as it should be seen. As it really is. Not clouded by your illness, weakness or sadness. It’s not a feeling of getting even, revenge, stating your case. Not at all. It’s a process of speaking your truth, letting go of the hurt, confronting the person who’s done the most damage, forgiving them, in the hopes they learn from it but knowing too, they may never admit to anything but you’ve spoke your peace. At least you’ve released it, forgave and learned to never accept that from anyone again. Maturity plays a large role in whether another person will stop what they are doing, think about it and humble themselves to say, maybe I need to change that. And most of all, the degree at which they want you to be in their life and to GET WELL is a major sign of responsibility. If it hurts the person they say they love then they will listen and not immediately be defensive. Because the last thing they want is their best friend to hurt or be sad. Especially if your truth you speak about is the same issue for ten years. Some people love the “idea” of a relationship but they do not want to have to do the work and give up some of the perks of being single to really be in a committed relationship. It’s not hard when you are each other’s best friend. But learn to recognize those sabotaging behaviors of a person who is continually adding to your illness without knowing it and be able to gather your strength to tell them so. That you KNOW for a fact it’s happening and you want so much for it to stop because you do care. Hopefully they will be open to it.

THAT is how you finally get on the road to getting WELL. Otherwise, you will always aim to please and miss your opportunity to speak truth and get well so you can return to the parts of YOU that are still within you that lupus can’t touch. Your life will find more meaning and the feeling of hopelessness will disappear with that best friend BACK by your side.

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