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How to Cope and Thrive While Living With Lupus

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There is nothing more complex, confusing, and scary than being diagnosed with an illness. There are so many questions you have but never know where to begin. Maybe you dwell on, “Why me?” Or maybe you just take the diagnosis and move forward, accepting it as God’s plan or as your destiny. Life is challenging regardless. It’s full of joy, sadness, love, and pain.

Twenty years with lupus, five years off meds, currently in my fourth year of remission, and it has been nothing short of difficult. But over the years I’ve found there are things to help me cope and thrive, ensuring that I’m living the best quality of life I can.

1. Find your balance.

We have to remember we can’t control every aspect of our lives. Not every day is a good day, and that’s OK. Each day has different variables, but I strive for progress in emotional, physical, or mental health. Sometimes that means journaling more, baking, or taking a day to do absolutely nothing.

I believe that the body goes where the mind goes. I do what I can to lead a positive life, but I’m human and have moments of sadness and frustration. The key is to learn to pinpoint how things and situations make you feel, physically and emotionally.

Being balanced isn’t just about fitness and health. It’s about surrounding yourself with good people, enjoying what you do, and finding ways to incorporate what keeps you well. Balance is eating chocolate and binge watching the Harry Potter movies every time they’re on, no matter how many times you’ve seen them. It’s walking your dog at the beach and gym time and happy hour and writing. We are always evolving, so the things that keep you happy and centered can be ever-changing. Find your balance. It will help keep you strong in emotional struggle.

2. Don’t be afraid to say “no.”

We know that extreme stress can be toxic to our health, and honestly, nothing is worth toxicity. Hating and dreading your job will keep you sick. Negative people will tear you down if you allow it. Sometimes, you need to cut the cord on the things that are bringing turmoil into your life.

Don’t feel bad to eliminate that negativity or say “no.” I used to agree to always help or do things I didn’t want to do, even though I wasn’t feeling well. I struggled with that for years, because I wanted to be helpful. But one day I learned how to say “no” and took a step back. I stopped overextending myself, doing things that caused me stress, and committing to things I didn’t want to do. I learned that by doing those things I would only get sicker, so I became a little “selfish” in the healthiest of ways. Because if you continue to give, people will continue to take and take… until there’s nothing left of you to give.

3. Putting yourself first isn’t selfish.

Whether it’s with your doctors regarding your care, or just in daily life. You are all you have, and you have to make decisions that are best for your health. It’s not selfish to trust your intuition and question your doctors on treatment if it doesn’t sit right with you. Since lupus and most autoimmune illnesses are complex, sometimes what you’re feeling isn’t a standard side effect or reaction, but we aren’t all statistics. You are your best advocate, you know when something isn’t normal and you have the right to question your doctors on it.

In relationships or friendships, you’re no good to anyone else if you’re not taking care of yourself. Taking care of you isn’t selfish, it’s the best thing you can do for yourself and everyone around you. It’s called self-love and self-care, and in life, the most important relationship you’ll ever have is the one you have with yourself.

4. Appreciate the moment.

Sometimes we get caught up in missing the “normal” things we see everyone else doing. Getting up in the morning with no pain is a victory. Getting up in the morning with pain and accomplishing something is a victory. The fact is, living is a victory.

I went through a period when I was very sick that I wasn’t sure if I would make it, so I’m grateful for each day. Self-pity is not a reality in my world. I’ve had moments of feeling lost, over-exhausted, and wanting to figure out why I wasn’t getting better, but never self-pity.

I’m truly thankful each day I open my eyes.

You’re going to have good days and bad days. Whatever it is, accept it and be present in the moment. Life always throws obstacles in our way, and the emotional struggles for me are very real. I go through periods where I cry (a lot), for whatever reason. But then I have fits of laughter in between and try to stay with that.

The truth is, whether you want to laugh or cry, embrace your laughter and your tears. Celebrate the ups and downs because that’s what life is. Being alive and being able to feel these things is the biggest blessing in itself.

5. You’ll always be different, but it’s not a bad thing.

Yes, you have an illness, and yes this makes you different than other people, but not in a bad way. The fact that you were dealt different cards in life doesn’t mean you are any less of a person. I feel that fighting lupus has made me who I am. It has taught me empathy and how to be an advocate for myself. It has taught me that I’m strong and will persevere.

There are times I wish I could have a normal job or social life, but my disease will always be temperamental. My remission means my disease’s activity is quiet right now, but I still have symptoms. There are days getting out of bed is a struggle, or my joints are swollen, or I just “can’t even.”

Then there are relationships. These are challenging because there’s a part of me that’s so protective of myself, and another part that believes in full disclosure up front with a potential partner. In another world, I would’ve loved to be a mother and give my future husband his children. But that’s not in the cards for me, and I pray I find someone who understands that and loves me regardless.

Just because you can’t do or have the same experiences as the majority of people because of an illness, it doesn’t mean you’re any less of a person. Own your individuality, your triumphs and your struggles. You are different, and you know what? That’s OK.

Follow this journey on Lupus Life Balance.

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Originally published: November 14, 2017
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