Rachel's previous post about dating while on PD started a conversation between us that kept peeling away layers of honest concerns. And revealed more concerns.
Before I go nutty on the post I had planned, I want to support what Rachel is saying. And add a few thoughts.
We can tell you all the good stuff about doing PD. We would be lying if we said there were no issues. And since we agreed to be completely truthful about our PD experiences, there are some aspects of PD that present concerns. One of our primary goals for blogging about PD is that we hope to write the blog we wish we could have read when we started on PD. We wanted to write about the real experiences that your medical team can't tell you about. Here are some thoughts that came to mind after reading Rachel's amazing post.
1. You know this, but here it is in black and white: There will be a catheter on the outside of our bodies. A plastic tube. A thing. A piece of medical equipment. Hanging off the outside of the body. Can you handle this? You probably can. But be prepared for days when you resent it. When I tell someone that I am a dialysis patient, sometimes they tell me, "You look wonderful!" What I think they mean is, "You look wonderful - with your clothes on!" It can be a struggle to accept the new physicality of PD. Once I get my pants on, I feel normal. When I see myself out of the shower with the catheter, it can be quite striking. And I mean "striking" as in... unusual. It's just not what you expect to see on a body.
2. The catheter is the thing that defines our disability. If there wasn't a catheter, the whole issue of dialysis would be completely hidden. But that's not possible with PD. The catheter is a lifeline. But it can come to represent a lot more. And can take over our definitions of ourselves. Can you deal with that? It's an unusual kind of accommodation for dialysis. It makes so much of our lives really great. But it's always there. And changes your body.
3. When we see someone who has gone through chemotherapy, we tell them they are brave and beautiful. Do we not also deserve that for ourselves? Of course we do. But we are a nearly-hidden population and people may not even know what we go through. So we should be telling ourselves this. We want to encourage positive motivation, but acknowledge that self-esteem can be a hurdle. I find that when I meet someone with an obvious disability or physical affectation, I think, "They are so strong and awesome." Maybe we need to tell this to ourselves more often. It's something I know I am working through. Even after all these years on PD. I would love someone with a disability. Someone can love me, right? I can love me, too, right?
4. Are we living normal lives? Yes and no. I am doing what I want to do within the few limitations of PD. Sometimes I wonder if what I really mean is, "PD is great because it's better than hemodialysis." The point of view changes all the time for me. I know I don't want to do hemo. But really, I also don't want to do any dialysis. I just chose the method that works for me. Am I honestly dealing with the self-image issues and limitations or am I smiling through the disappointments? For the most part, I am okay with all of this. PD was so incredibly freeing after trying hemo, so I'm comparatively happy. Just know that there will be days when you feel like all is right with your PD-filled life. And there will be days when you might resent it. It's kind of a big deal. We need it to survive. So, maybe that sense of need causes us to put aside the resentments. I mean, what is the alternative?
This blog is alive. It's changing all the time. A work in progress. New ideas and thoughts are going to come up all the time. And we will try our best to address them with candor and honesty.
Rachel talked about the issues associated with dating while on PD. Her ability to open up about the truths of her experiences brought a lot of things to the surface that we wanted to discuss. We have a lot of time to cover a lot of topics. Every so often we will go off on a tangent and simply talk about what we are feeling at that moment. We are so thankful you are reading. And hope you won't feel alone on your PD journey.
- Rachael M.
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