This is a new subject for me to discuss. Dating. Dating with a chronic illness, actually. And it is a really touchy subject. A subject for which I have no answers and am actually completely new to. Therefore, I guess this is the start of a new journey that I can try my best to navigate somewhat publicly in the hopes that it might help shed some light on this topic and alleviate some of the loneliness and alienation I am currently feeling.
I have always been an outgoing person. I have always been a girl who can get dates or who has boyfriends. There has never been a shortage of romantic drama / comedy going on in my life. Even though I was diagnosed with lupus when I was 25 it never really had a major impact on my life. It was just sort of there and popped up from time to time and lasted a few days and then went away. I took my medications (for the most part) and it was a part of my life that wasn’t scary and didn’t really cross my mind.
Until 2010 when I started to lose my hair. All my lovely hair fell out and I knew something was wrong, but I kept going to the doctors and everyone kept telling me that I was having a little flare and it wasn’t a big deal. I met my ex-boyfriend around the time my hair had fallen out and even told him about the lupus on our first meeting. But it wasn’t a big deal – to him or to myself. My decline continued over the course of our relationship and the next few years until I hit rock bottom with the transverse myelitis and the brain seizures. And our relationship ended (amicably) during that time as well.
I’ve spent the last 2 years in recovery mode. Learning to walk, learning to live with the new boundaries that this disease and all the residuals have placed on my life. It has been a difficult road. And lonely at times despite having the most wonderful group of friends and family constantly there for me. But I also was not in a place where I felt like a romantic relationship was a priority. It doesn’t help that I feel completely unsexy and ashamed of my lack of physical abilities.
Recently I thought it might be a good idea to try to date again.
As it turns out. Maybe I wasn’t ready.
In fact, it turned out to be a complete nightmare for me (and probably for the other person as well).
I wanted to go out there and be myself. Or probably more my old self rather than this new me. But I also wanted to be completely honest about the physical state that I am in. This turned out to be much more difficult than I had originally expected.
The being honest part turned into a giant mirror where I had to say out loud all of the things that were wrong with me. And when I lumped that all into a package it was devastating to hear. I think it was more devastating for me to hear because I haven’t ever said it all out loud like that. I can’t even imagine being on the receiving end of that speech. Plus I didn’t even get to get through the laundry list of “I can’ts” because some of them are so embarrassing that it would take seeing someone a while to have that conversation.
The list of facts or I can’ts went something like this:
- I can’t walk long distances. Most of the time it is difficult to even walk short distances because I am in constant pain in my spine and legs.
- When I do walk my legs feel like I have 50lb weights strapped to them because of severe nerve damage from the waist down. This adds to the pain and the fatigue that I suffer.
- I am perpetually tired. I may want to be fun and be the life of the party, but I probably need to be in bed by 10pm otherwise my next day will be ruined. I am so chronically fatigued that I can barely stay awake most of the time and it feels like I am living with my head in a cloud. I forget things, I become irritable, I can’t pay attention for very long.
- I can’t stand for long periods of time. If we go somewhere I need a place to be able to sit down.
- I can’t go out in the sun. My lupus starts to flare when I am exposed to the sun.
- I can’t go in the cold because I have Raynaud’s and my fingers and toes will turn blue and go numb.
- I can’t pee normally. I have to use catheters so if you see weird straws in my bathroom that is what they are.
- I can’t poop normally. The nerves in my bowels and my bladder have been permanently damaged by the inflammation of my spinal cord. This means that I have to take medications and deal with a ‘bowel management program’ that is neither sexy nor fun. This means that I have constant anxiety about going to the toilet because accidents can and have happened. This also takes a few hours of my evenings so staying over is probably not an option unless you want to watch me run to the bathroom 15 times in a row. If I don’t take care of this I spend the next day in constant anxiety and pain on my spine.
- I am on a lot of medications. These cause me to have gastro issues or weight gain or moodiness.
- I sometimes walk with a cane. But you do get free handicapped parking when you are with me.
- My lupus will never go away. It it under control and it fluctuates. This causes me to have pretty severe anxiety along with all the other things that are wrong.
Yeah. That list is pretty much a bummer. When I said (most) of it out loud to someone it basically caused me to regress and feel totally worthless and incapable of continuing the conversation. Who would want to date someone that has that many issues?!? I ended up feeling like a giant, sad loser.
I never wanted to be defined by this disease or by the limitations that it has placed on me, but recently it seems to be enveloping me to the point that all I see are these things because every day is a constant struggle to keep afloat. Adding the additional burden of dating on top of that was challenging because it drew attention to all the things that I don’t have to talk about all the time with my friends because they know all of it and accept it.
I ended up telling most of this to a person that I was seeing. And he took it all in stride which was encouraging and also terribly kind of him, but at the end of the day, I was still a wreck all of the time. Trying to find time for date nights when I am chronically fatigued, being “on” and in a great mood, worrying about someone else’s feeling, feeling guilty for always being tired and everything else that goes along with dating left me filled with constant anxiety and stress. And seeing myself through someone else’s eyes as this sad and incapable person who was filled with excuses and limitations really traumatized me. I don’t want to be that person. I am not that person. But that was who I felt like I was becoming and I don’t want to be pitied. I couldn’t continue seeing him because I was paralyzed with self-doubt and fear.
So, long story short, I’ve decided to shelve the idea of dating for a little while longer while I try to work through some of these issues. It is sad that something that should have been enjoyable turned out to be so difficult, but I’m glad I made the attempt even if I failed at it so miserably.
I think my next post will be brainstorming ‘things that I can do when dating with chronic health issues’. I might not be ready now to jump back in, but perhaps working on psyching myself up will help me get in a better mental state for that eventuality.