Brandi Lewis shares her journey with paroxysmal nocturnal hemoglobinuria (PNH), from the anxiety of disclosing her diagnosis to navigating fatigue and canceled plans while dating. She reflects on honesty, self-worth, and the strength it takes to seek meaningful connection while living with a chronic illness.
Transcript
Hi, my name is Brandi Lewis. I’m a blood disorder awareness educator. I like to help anybody that’s diagnosed with any blood disorder kind of make it through.
When it comes to dating and relationships, the one thing that I found is when I first start dating somebody, the one question on my mind is always, “OK, how am I going to tell them about my diagnosis?” It’s something that has to come up.
So I like to take it slow. I like to feel that person out. But for me, I’d say by at least date three, if you’re really into that person — that’s what’s really helped me. To really find the person I feel like is best for me — just being open about what I’m diagnosed with.
Ask them if they have any questions for me, explaining my diagnosis, of what it is, what happens, the symptoms that come up. It comes with so many symptoms, and one big symptom with PNH that I have experienced is fatigue. And with fatigue, there’s no reason for it, but you’re just tired. I mean, for me, sometimes I will lay on the couch all day because I just can’t get up and do anything.
But when you’re in a relationship, you’re going out on different dates and you’re getting to know each other, so it can make it hard sometimes when you have to reschedule different dates or appointments that you guys may make together. And just being honest — “Hey, I’m not having a good day” — is the way that I really like to approach it. Just being open and honest about it.
Yeah, I think when it comes to explaining my diagnosis to somebody that I’m really into or somebody that I really may possibly see a future with, it comes with some anxiety — comes with the stress and the worry of, “How are they going to take this information? Are they OK with it?”
One big question I’ve always had for myself is, how can I find a partner that I know can be with me during the hard moments? The times where I have to go in the hospital, I may have to get treatment — am I going to have that partner out there? And so for me, watching my partner’s response in the way that they handle it is a big deal for me. But coming out with that information is hard.
So I say talk about it with your loved ones — the ones that really know about you and know your diagnosis and how you are. I think it’s good to get advice from them.
My parents were my caregivers. Funny enough, I’m kind of open with them about my diagnosis and being in relationships and dating, so they’re really able to give me advice on, you know, maybe I’m stressing too much about it — or approach it this way. I think that kind of helps, for me, minimize that anxiety and stress that comes with just coming out the first time with what’s going on.
So for anybody that may be hesitant to enter into another relationship, maybe they feel like it may be another added stress, but they want to try — I say take it at your own pace. If you want to see if dating is something you’re open to, try a couple dates. If it’s not something that you think you’re into right now, I’d say make a list of what you’re truly looking for in a partner before you actually go after that, because I think that helps a lot.
Battling chronic illnesses is hard enough, and for me, I’ve had that guilt at times where I’m like, I feel like I’m putting this chronic illness on somebody else as well. And it does come with some of that guilt. But people have always reminded me that you will find a partner that truly does not care what is going on with you, and they really just want to be there for you and support you no matter what is going on with you.