Living With A Chronic Condition? Here Are 5 Hacks You Need To Know
Last updated: May 2023
I represent one of the 60 percent of lupus patients who are diagnosed with lupus nephritis, a type of chronic kidney disease (CKD).
I’m a black woman and at the time, in my late 20s, I was in the demographic that lupus nephritis hits the hardest. I was also hit hard mentally. I was diagnosed with lupus (Systemic Lupus Erythematosus) in 2009 and was dealt another blow with the lupus nephritis diagnosis a year and a half later. I was newly married and life had just begun and instead of discussing how to start a family with my doctors, my appointments were about medications and lab results.
Some hacks I've learned along the way
Most of the support CKD patients receive is medical, but mental and emotional support is just as important.
Now in my 40s, having gone through every stage of lupus nephritis – from diagnosis to receiving a kidney transplant – I want to share some "hacks" I’ve learned along the way to share with CKD patients that I’d wish someone shared with me:
Find your tribe
If you’re reading this, you are beginning to understand or already understand the power of community. Sometimes, the people in our lives, our friends and family, who aren’t dealing with a big scary diagnosis don’t have the capacity to support us in the way we need – and so we search for our people.
Your tribe will be other lupus and lupus nephritis patients who are also going through what you are going through or have been where you’ve been. Knowing I have friends who understand what I'm going through without a lot of explanation and are here to support me is key for my wellness.
Along with your tribe, seeking the support of a professional therapist has been a huge help. In my 10-plus years in therapy, I have gotten the tools to work through the rollercoaster that is life with lupus nephritis. It is not easy navigating this disease and therapy is a great resource to get out all the emotions and learn healthy coping skills to help you move forward.
One piece of advice I always give is to be your own advocate. If something doesn’t feel right in what your doctor is saying or maybe you’re feeling something in your body that you’ve never felt – speak up. No one knows what’s going on with your and your body like you, so work on not being afraid to ask questions.
Take note: a good doctor should welcome questions and feedback. There’s no way they can treat you properly if you don’t tell them what’s going on.
Keep doing what you love
When you receive a diagnosis like lupus nephritis, your mind can automatically go through the list of what you have to “give up” or scale back. I encourage you to think about the things you can still do or discover new things to do that will bring you joy. Travel seemed impossible with lupus nephritis, particularly when I started dialysis. But, after I got a routine down and knew how to administer my own dialysis at home, I traveled.
Yes, my husband and I didn’t go out of the country – not wanting to risk missing the call for my kidney transplant – but we did travel. Me, Dexter (what I named my peritoneal dialysis machine) and my husband took many road trips and flights during my nearly five years on dialysis. Don’t give up on the things you love unless it’s necessary. Ask your medical team ways that you can still incorporate what you love to do or try something exciting and new.
Be gentle with yourself
I grew up with a lot of expectations and as I became an adult, I internalized those expectations. That all had to change with a lupus and lupus nephritis diagnosis. I wasn’t as independent as I wanted to be. I loathed asking for help and I hated being limited. I was forced to change my perspective – and I’m glad I did. I’m not perfect, but I’m much more gracious and patient with myself in knowing that it’s OK if I can’t get things done the way I used to or if it takes me a little longer to reach a goal or check something off my to-do list.
There is still a full life to live with lupus nephritis. I hope these “hacks” bring you a little peace of mind and guide you to living the best you can mentally and emotionally while you fight to be the healthiest you can be.
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