Barbara Alexander
Featuring Barbara Alexander from
Washington DC Metropolitan area
How long have you been living with lupus?
I’ve been living with all of my life, but I wasn’t diagnosed until 2016
Describe the version of you that exists on the days no one can see what you’re carrying. What does s/he look like, feel like, carry? You might think about the thoughts you keep to yourself, what your body is experiencing, or what it takes just to get through the day.
There is a version of myself that the world never quite meets. The one who wakes up already tired as if she ran a marathon in her sleep and no one handed her water at the end of the finish line. On those days, it looks like stillness on the outside. Quiet. Composed. I move slower, more deliberate measuring my energy like its currency. I can’t afford to overspend. To anyone watching I might seem calm, even peaceful, but inside my body is negotiating with itself. Every step is a conversation. Every task is a calculation. It feels like my bones are heavier than they should be, like gravity has singled me out. My joints whisper and sometimes scream. There’s a deep, invisible ache one that doesn’t always have a sharp edge, but instead lingers, dull and constant, like a low hum you can’t turn off.
Fatigue wraps around me, not just sleepiness, but a full body exhaustion that rest doesn’t quite fix. My skin might feel tender my muscles tight, my head foggy, as if my thoughts have to push through a thick cloud just to form. Even simple things like getting dressed, making a meal, answering a text can feel like climbing uphill and then there are thoughts that I don’t say out loud like how do I explain this kind of tired when apparently on the outside I look perfectly fine to them. Will they even believe me if I say that I can’t do it today? I don’t look sick so I have to keep proving that I am, which is exhausting. Push through just a little more just get through this moment there’s a quiet resilience in myself on those days but it’s not loud or triumphant. It’s steady. It’s stubborn. It’s choosing to show up in whatever way it can even when my body is asking me not to. It takes It takes strategy just to get through the day, spacing out tasks, resting before you’re completely drained, listening closely to signals my body senses, even when you wish you could ignore them.
It takes grace with myself when plans fall through. It takes courage to say not today in a world that praise is pushing past limits. I did that for years and underneath it all there’s another version of myself the one who feels deeply who carries not just physical weight, but emotional weight too the one who still hopes, still believes, still reaches for joy and small ways, even when my body is fighting itself on those unseen days, survival itself is an accomplishment getting through is not just getting through it strength and it’s pure form.
What is something you’ve had to grieve because of lupus that you’ve never actually said out loud? This could be anything—lost time, energy, relationships, your sense of normalcy, or parts of yourself you’re still redefining.
One of the things that I’ve grieved quietly without putting words into it is the loss of my predictability. Not just my health, my plans for my future and things that I wanted to accomplish, but the ability to wake up and know who I’m gonna be that day. Lupus doesn’t just affect the body. It interrupts the relationship you once had with yourself. There was a version of myself who can make plans without hesitation who didn’t have to to measure energy who didn’t have to wonder will my body cooperate today and even if I’ve adapted, even if I’ve become strong and resourceful, there’s a quiet grief and not being able to rely on myself in the same way.
Everyone has always said that I was dependable and I miss being dependable to others, but especially to myself there’s also a subtle grief around being misunderstood having to decide when to explain when to stay quiet when it’s just too exhausting to make invisible pain visible for someone else’s comfort. That within itself can create a kind of loneliness that doesn’t always get acknowledged. And then there is the version of myself that pushes through it anyway. The one who shows up, Smiles, gets things done I might even grieve how often I have to carry the load for everyone else While no one fully sees what it cost me. I’ve had to let go of a lot of things that most people never even have to think about losing.
What do you wish people (your family, your coworkers, your doctors) around you understood about your invisible ? It could be about your limits, your needs, or what support really looks like for you
I wish that people understood the daily reality of living inside of a body that doesn’t follow rules anymore.
I wish they understood this isn’t a bad day kind of illness. It’s unpredictable. I’m not somebody else that has the same disease as someone else just because they have lupus as well. That’s the thing that’s so insidious about the disease, the symptoms very person to person and situation to situation. I might look fine on the outside, but I feel completely depleted most of the time. I feel like I’m struggling to stay alive. I was gonna but I’m in constant survival mode and there’s sometimes I need to withdraw just so that I can charge kind sorter deal.
I wish that they also understood that the fatigue is that just been trying. It’s a whole body shut down and doesn’t think it’s wanting to do something sometimes really wanting to but feeling like my body has one percent battery. I have witnessed so much ignorance and damn near disrespect by people that choose to be unkind.
Tell me about a moment when you showed up fully—and no one knew what it cost you. Think of a specific moment—at work, at home, or with loved ones—where you pushed through more than people realized. Every day.
Every day I encounter people I try to be pleasant, pleasing, and polite. I never say a word about what I’m going through because where do I start?!
Have you ever felt dismissed, misunderstood, or unseen because of lupus? What did that moment teach you? Share as much or as little detail as you feel comfortable.
I definitely have experienced being dismissed, disrespected, misunderstood in the ladder, but because I have lupus I have to always regulate my mental health, my blood pressure and everything that’s going on internally. I just witnessed and move onto the next.
What has lupus forced you to learn about yourself? This could be about your strength, your limits, your voice, or how you care for yourself.
Lupus has taught me that I’m the only person that’s going to be with me for the rest of my life. I’m the one in this illness. I’m the one dealing with it and it’s a lot and it can be too much on most days. I have the understanding that some people will not have a capacity to love me through it all will not have the capacity to walk on this journey with me and I am a complete peace with that I think, losing all of my family early at least the people that had a hand and raising me, gave me a natural ability to play witness to life in different people and different emotions without staying attached to anything I think it’s somewhat of a spiritual Evolution.
What boundary have you had to draw that felt revolutionary? And how did it change your life? Boundaries can be big or small—resting, saying no, asking for help, or choosing yourself.
I had to tell people no. I had to be the person that tells people that I can’t listen to all of their problems in all of their complaints anymore. I will always do what I can to help someone else no matter what because that’s who I am at my core but not everyone is like that but when I just don’t have the energy to spare, I don’t.
What are you unapologetically doing now to nourish yourself—body, spirit, mind—that medicine doesn’t prescribe? This might include rest, nature, spiritual practices, therapy, movement, or anything that helps you feel whole.
Rest, rest, rest, rest. Some days I feel like I am slowly dying and some days I feel like I’m fully prepared to, but then the next day I wake up again I just always tell myself, but I’m not the first person to go through something this difficult especially because my aunt passed away from complications of lupus and I won’t be the last. I do whatever it is that I want to do at any given minute or a moment no matter what and no matter who likes it or not.
Once upon a time, I was a strong woman, but today I am no longer a strong woman, but I am a woman of strength and there is a huge difference. I tried to be the friend to myself that I know that I need.
What does your power look like—not in spite of lupus, but because of who you’ve had to become? Power can be quiet—honoring your needs, advocating for yourself, or simply continuing.
What are you most proud of in yourself right now? It doesn’t have to be big—sometimes the smallest wins mean the most.
I’m very proud that I haven’t given up yet. Sometimes I feel like giving up, but I don’t. I keep putting 1 foot in front of another.
Where do you find your strength on the days when things feel heavy? This could be people, practices, mindset, or something within you.
My strength comes from God. It comes from the intimate relationship that I have been so lucky to cultivate over the years. The relationship is strong and it keeps getting stronger. I often imagine myself having an auto pilot button and when things are too much I press that button, and I let God. I let go and let God.
What does living a full life look like for you now—on your terms, not anyone else’s? This could show up in how you rest, set boundaries, move through your day, define success, or choose what truly matters to you. There’s no one way to answer this—just share what feels true for you.
I sleep a tremendous amount.
What is something you’ve chosen to still pursue, experience, or hold onto—even with lupus? This could be a dream, a lifestyle, a relationship, or simply a way of being.
I still hold onto my bucket list. I still add things to my bucket list when I get to scratch something off of my bucket list that’s when I feel like life even with its difficult difficulties has been worth living.
If you could say one thing to the person who just got their diagnosis—the one sitting alone in the car after the appointment—what would you say? Speak to that person however you needed someone to speak to you.
Take one thing at a time. If you need to cry, do it if you need to scream, do it just pace yourself and take one
thing at a time. Focus on what is necessary and get rid of what is not.
What does support look like for you—and how can your community show up better for you? This could include friends, family, workplaces, or healthcare providers.
I think that everybody is different and everybody support will look different but the one person I feel that knows me best is my cousin and my best friend. I feel like they are my ride or dies whatever I need no matter what it is space, medication’s a good cry they’re there to listen every person if they have lupus or not, should have that in their life.
What is something you want to say to the person who has supported you through your lupus journey—but may not say often enough? This could be gratitude, acknowledgment, or something you’ve been holding in.
It definitely has taken a village. For everyone that has come along this journey with me. I’m just so grateful for the help that you choose to render. Thank you for valuing my life even when I wanna give up
What does support look like for you—and how can your community show up better for you? This could include friends, family, workplaces, or healthcare providers.
Support for me looks like patience on the days when my energy is low or I have to cancel plans last minute without feeling judged or guilty. It also looks like encouragement, especially when I’m pushing through work or life with pain that others can’t see.
What is something you want to say to the person who has supported you through your lupus journey—but may not say often enough? This could be gratitude, acknowledgment, or something you’ve been holding in.
I love you, i appreciate you!