What Lupus Has Taught Me

Lupus, what have you taught me?

Compassion

You've taught me compassion, not to judge anyone, that many suffer in silence - behind a smile while inside they are dying. That the "ride or die" friends I thought I had, I don't- that's a hard one, but on the bright side, I now have the most amazing people in my life who are true friends and understand 100%. I would have never dreamed some of these amazing people would be the ones keeping me going every day.

To never give up

I've learned when I want to give up, to try harder. Especially when I get bad news every time I go to the doctor and hear that nothing is getting better, just worse. There are people that need me, as much as I need them, and unless you reach out of your hole and reach for their hand, you will stay in that hole.

The meaning of strength

I've learned I am blessed with an amazing family, who would do anything for me. They have made me their number one priority. I've learned to set aside my pride and take their help, which is the most difficult challenge for me. I've learned to let people in, into a dark desolate place that I would never admit was inside me. I've learned that others have that place too, and together we can help each other. Those who post the most amazing positive messages on FB are the ones hurting the most, but give hope to those who need it. I've learned that the "weak" are really the STRONG, it's so easy when your life is great, try living when it takes all you got to find the strength and courage to get out of bed in the morning just to face another painful day.

The power of family support

I've learned that people don't understand how difficult it is on my family - probably more so for them than for me. It's so hard to watch your wife, mother, daughter, sister, etc go through a life of never-ending pain and not be able to cure them. Think of them, pray for them, they are my lifeline, yet no one even understands what they go through EVERY DAY. My children, My husband, My Mother and my son-in-law are my lifeline. I would be lost without them. They are in a life they didn't ask for, but got stuck with just the same and never complain. They are always there for me. MY MOTHER, what can I say? She cares for me every single day, when she moved in with me years ago it was so I could take care of her, and here she is taking care of me.

To let go of some friendships

I've learned that people just don't understand. They don't know what to say until it happens to them or one of their loved ones. I've learned people forget you once you can't do for them anymore, the most painful as well, since I would have parties very often at my house full of people I thought were my great friends, to now find out they only came for the free food and drink and for the good times. I've gone out of my way for so many at the drop of a hat. You could call me and I would be there no questions asked. I also learned some people don't know how to "be there" for you, so they pretend it's not happening.

To prioritize my needs

I’ve learned it’s OK to say "No" to others and that it’s important to take care of yourself first. Your mental & physical health is priority number 1. I've learned I'm a prisoner of my own body- not my mind. I'm still me. I'm still the one here for you, the one who stands up for you, the weak, the tired, the misjudged, the misunderstood. Lupus can't stop me or my mouth, and it never will. So if you need a friend, I'm here, and anything we talk about is between us. Everyone deserves a friend like that.

That it's ok to be angry

I've learned life isn't fair, at all. Do I get angry? I sure do, very angry to be honest. This was supposed to be my “time” with my husband. We've had kids since we were kids, and now was our time to live our lives and enjoy each other. To go on vacations, adventures, do what we want and that was stolen. Traded in for him having to care for a sick wife instead of having one to enjoy life with. His life has been robbed. Working 12-hour days almost 7 days a week to keep us afloat since I've been disabled and out of work for 6 years. I have to watch him come home hurting, sore, and almost crippled. And yet not one complaint from him, for sickness and in health, for richer or poorer, he took his vows seriously, and for that, I am both saddened and blessed at the same time. I love him with all my ❤️.

That I am blessed

I've learned I'm the blessed one, I have an understanding family - so many do not. I feel for those people who are alone, truly alone, and feel worthless because their families call them lazy, etc. NO ONE WANTS TO LIVE LIKE THIS, it's not their fault- so if you are judging a friend or family member badly for their illness, wake up and support them.

I don’t like you Lupus-, but thank you for teaching me how to be a better person.

Walk to End Lupus Now, Philadelphia

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