When you love someone with a chronic illness, you buckle yourself into a whole different type of roller coaster from the normal ups and downs of relationships. You ride the ups and downs with them and of their illness too. You have to accept there isn’t anything you can do to change when they get worse or better. It can be hard, but likely if you’re reading this, you know it’s worth it all. The type of unconditional love you receive back is different from any other. They have been left before because of their illness so they know to hold on to the supportive ones tightly and never let go.
My boyfriend has postural orthostatic tachycardia syndrome, otherwise known as POTS. He has had this for seven years now and was one of the first things I learned about him. For those of you who don’t know what POTS is, it is a condition that affects the blood circulation and can cause many different symptoms. One of his biggest symptoms is he passes out randomly when he goes from a sitting to a standing position with no warning or reason. He can be passed out anywhere from 2 minutes to hours. The longest I have seen him out is around forty minutes. When he wakes up he always has a migraine, and the longer he was passed out for, the worse the headache. He also sometimes gets cuts from hitting objects on the way down. He takes Advil, cleans and bandages any cuts and then goes and lays down. There have been periods where this is a daily occurrence, and times where he has two weeks before he passes out.
What I can do is very limited but I do my best. When he passes out, if I can move fast enough I try to make his fall not as hard. I wish I was strong enough to catch him completely. I get a pillow for his head and sit next to him until he wakes up as I have seen his parents do. I check his heart rate to make sure he is okay and make sure he isn’t bleeding. Other than that, all I can do is wait and fix his hair. Whenever I tell people about these occurrences they ask how I don’t freak out every time. Something his mom told me from the first few times I saw him pass out at his house was ‘it’s like he is sleeping’. So I just think about how his body forced him to take a break and sleep while his blood pressure and heart rate stabilize. While he’s passed out, I try different things to wake him up, even though I know nothing will. I sometimes poke his cheek, do the palpebral reflex that I learned to do on dogs or sing him his least favorite song, “Baby Shark”. I also massage out his tense furrowed eyebrows, hold his hand and kiss his forehead to try and make any boo boo’s better. Through the months I’ve learned to have a water bottle, hydration is vital for people with POTS, and Advil ready for him when he wakes up. I also know that if we had plans, they are likely going to be replaced by him napping and me sitting next to him, usually on my phone.
Loving someone with a chronic illness means plans will be changed and having to be understanding. He is a trooper though, if his headache isn’t too terrible and he knows I was super excited for something, he pushes through and waits for the Advil to kick in. I’m usually not upset with plans being changed because I’m happy simply being with him and knowing I’m comforting him just by being there. I admit that it is hard not to worry about him when I am not there and I know he is home alone. He has learned that if he is going to take a nap to text me, not because I need to know everything he does, but I need to know he isn’t passed out somewhere in his house in a pool of blood. Do I think about it every time he stands up and we are in public? Not every time, but it does happen frequently. Having to explain the situation to people and not needing to call an ambulance is a situation I am lucky enough to have avoided for over a year and a half now.
My family asks me how I deal with him having POTS and it’s just something that happens and even though I hope for a cure to be found soon, I know this might be what his and my life will look like together. All I can do is support him and love him through it all. All of the good times together, our love for one another and how happy we make each other make this rollercoaster worth it.
Feel free to reach out if you are also in a relationship with someone who suffers from a chronic illness and want to talk, I’m always here if needed.