Brandi Lewis shares her experience living with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, from navigating unpredictable waves of fatigue to learning when to rest and when to push forward. She reflects on honesty, support, and the strength found in listening to her body and giving herself grace along the way.
Transcript
Hi, my name is Brandi Lewis. I am a blood disorder awareness educator, and I also sit on the board at Bionews. I was diagnosed with two rare blood disorders: aplastic anemia and PNH.
The way that I describe fatigue when it comes to PNH — it’s a different feeling in your body. For me, I always describe it as your body’s just not letting you do anything for the day. I just really can’t get anything done because my body is just so much weight.
Most of the time, whenever I’m battling fatigue, I am just laying on the couch, and just pushing off of the couch — that takes so much energy and time out of me just to do that.
It’s easy to relate fatigue and think it’s the same as being tired. I think when you’re tired, you’re in a different headspace, so you’re not really having that weight feeling in your body.
I think more, when it comes to being fatigued, it’s more of what’s actually happening in your body, and just that really heavy, weighted feeling that you have.
When fatigue hits me at different times in my life — very inconvenient times, like, say, I have to go to work that day, and I wake up and I know that I’m fatigued — I really, truly ask myself: “Am I OK? Can I make it through the day? Or am I really needing to just focus on my body and my health?”
In that answer, I feel like I have to be very real with myself of where I am currently in that moment. I feel like a lot of the time, it’s easy just to fake it and be like, I’m OK. I’ll push through and make it — even when you know you really don’t have the energy to do that.
And then I also rely on support and help. Like, I’ll call my parents and ask them, “This is how I’m feeling. What do you think I should do?” Getting their advice helps a lot, just because they were my caregivers when I was really, really sick during this time.
So they understand the journey. They understand what I’ve gone through personally, and so it’s really good just to get a second set of eyes and someone that understands what I’m going through, and just to kind of help talk me through that time.
I think it can be very easy to battle which one is more important than the other, and battling if whatever it is that’s being inconvenienced is more important than your health. But I think really just staying true to who you are and knowing how you feel in that moment is really the most honest answer for you. And that’s OK, whatever it may be.
A personal story with me of battling fatigue was really like being on a family vacation. When me and my family go on vacation, we like to try and do and see everything. And I remember this year just knowing that I already was having to take it easy. I was experiencing just very high, strong symptoms from PNH and aplastic anemia.
And so this family vacation, I woke up that morning just fully fatigued, and I knew that I was going to have to take it easy that day. And my family very much understood what I was going through. So I really attended some things, and some things I was like, “Hey, I’m going to go back to the hotel and rest because I have to.”
For me, it really helped just to know when I was OK to kind of do things with the family, and know when it’s OK to just say, “Hey, I’m going to take a step back and I’m going to rest. You guys can continue on, or if somebody wants to stay back, they can.”
But just being very open and honest with my family of how I’m feeling in that moment really has helped a lot.
I think it helps also for them to give me grace in those moments, because they just know how much it can really tire me out. I think it’s really great to have a support system that gives you grace within those moments and really understands what you’re going through.
For anybody out there that may be struggling to cope with fatigue, I first tell you to listen to your body. You know yourself, and the more that you battle health issues, I feel like it just is kind of ingrained within you that you begin to understand your body, and you kind of really become one within that health journey that you’re going on.
So I always say, first off, listen to your body and really just be real with yourself — of where you are in that moment. And also just be OK when other people don’t understand what we battle when it comes to fatigue. And it’s OK.
You know what you need in that moment. You know when your health comes first. You know when you really need to take a break and really just stay true to yourself.
Because in the end, when you look back on your journey and look back on that one time in your life, you will be really thankful that you really put your health first. And that’s the reason that you’re here today. So it all works out.
