Yes, I know. All relationships require communication. I’m not suggesting my healthy friends give up communicating with their spouses/ significant others. I am, however, suggesting that my chronic illness friends recognize how crucial a role communication plays in their relationship.
I had a Cricket doll when I was a kid (A talking doll of the early/ mid 80s- If you remember Cricket, you and I are instant besties!), and I still remember my favorite line from the creepy, robot-like doll- “Do you wanna know why I talk so much? It’s because I have so much to say!” Yeah, that’s me. I am typically an over-communicator. I talk about my breakfast choices, my dreams, current problems with fixing my hair, my views on kale, pretty much anything that bounces through my mind. The thing is even though I talk a lot, I don’t necessarily say what I’m really thinking. Sharing what is really going on requires vulnerability. It requires me to trust that Joe will be able and willing to meet my needs. And, honestly, even though we have been on this crazy, chronic illness road for a while now and have gotten pretty good at understanding each other, sometimes the wheels of the communication truck fall off . . .
A few weeks ago I had an appointment with a geneticist, and I was quite nervous about it. See, when you have POTS, you typically have some sort of underlying cause. Basically, POTS is a syndrome that happens as the result of another illness (not always, but this is often the case). It’s frustrating because it’s difficult to find a doctor who understands POTS well enough to diagnose it, and even once POTS is diagnosed you have to keep putting pieces in the puzzle to figure out why you have it. I was referred to a geneticist to investigate any underlying conditions.
I was nervous for a number of reasons. There’s the obvious, “Oh my goodness, please don’t give me any terrifying or devastating news” reason to dread a doctor’s appointment. However, when you are a generally healthy looking 30 year old female, a lot of doctors don’t seem to take you seriously- which is an incredible waste of time and resources. Anyway, the doctor was wonderful. He took me seriously, and he was able to pinpoint my condition just from my family and medical history (which he confirmed through a clinical evaluation). I was diagnosed with Ehler-Danlos Syndrome (http://ednf.org/hypermobility-type)- EDS is a condition where the body makes faulty collagen. As a result, joints are lax (because the ligaments holding them together are made from poorly formed collagen) causing incredible joint pain and other systems throughout the body are also negatively affected. (Did you know that every system in the body requires collagen? Who knew?)
So, this basically, sort of, stinks. Because POTS occurred as a result of a lifelong, genetic condition, it is unlikely I will recover from it. Not to mention the inevitable lifetime of joint pain and dislocations that comes along with EDS. It’s a lot to wrap your head around. However, I wanted to avoid a meltdown. So, when Joe and I left the appointment I said, “That was a great appointment. I loved the new doctor.” That was all true. The appointment was everything I needed it to be. It was informative and conclusive. The doctor was helpful and kind. None of that changed the fact that I was still reeling from a new diagnosis, though.
What happened next was completely my fault, but my intentions were good. I gave Joe the most positive spin ever on a doctor’s appointment (I mean, he was in the room with me. I just assumed he already felt gut-punched by all the scary stuff.). As a result, as we drove the 2+ hours home from the doctor, I poured through the information the doctor had given me about EDS while Joe called people and kept telling them how we had had a wonderful appointment. Hmmmm . . .
Again, this really wasn’t his fault. I didn’t share my concerns with him. He wasn’t in my seat reading about aortic aneurysm risks or organ ruptures. He wasn’t imagining a life of chronic debilitating pain or wondering how much more pain he could deal with before he just couldn’t deal any more. Nope. All Joe had to go on was, “That was a great appointment. I loved the new doctor.”
What happened over the next few days was a continued downward spiral. Because Joe had to miss work to take me to the doctor, all of his coworkers knew about my appointment. As people asked about the appointment, Joe kept assuring them it went really well. And, it did. Or at least that’s what I said. Or maybe what I wanted to believe. I don’t really know. I only know that I felt more and more isolated every time I heard Joe give the good report. I spent a couple days feeling all sorts of emotions- all sorts of alone. I was hurt that he didn’t understand how I felt. I was angry that I had misled him so badly. I was completely confused about how to fix the mess.
You can probably guess how this ends. I was hurt and angry and defensive, and Joe, well, he was clueless. My husband is the most intelligent man I know, but even he can’t read minds. I was able to communicate how I was feeling, and Joe (in a way only those of you in a committed relationship can understand) apologized for doing something that he wasn’t even aware of doing. Was there anything for Joe to apologize for? No, of course not. The problem was my own creation. However, I created the problem out of an effort to stay positive- an effort to make him (and maybe me) believe that I wasn’t freaking out.
The moral of the story, crazy chronic friends, is to be honest. Be honest with yourself, first of all. If you are scared of a diagnosis, a new symptom, or whatever, don’t try to fake it. It won’t help. Admit that you will probably need some emotional support. Then, be honest with whomever you are trying to maintain a relationship with. I should have said, “Okay, Joe. That scared me. I’m going to need some support while I wrap my head around a new diagnosis.” My first few days (and weeks) following diagnosis would have been a lot simpler. Heck, he might have even offered support by means of chocolate, and that would have made everything better.
Peace, love, and health, friends.