For years, my Rheumatologist has had two standard lectures for me: "Stop trying to prove you can have a normal life" and "You need to get married."
The first is never going to happen, because, well, I'm me.
I'd argued about the second every time he raised it. But he insisted that I should be married: that I needed to be able to share the responsibility of running a household, managing a budget, raising kids, etc, etc, with someone else. That I simply couldn't keep going on trying to do it all on my own.
My recollection of marriage had always been that I'd always done everything on my own anyway, and that life was easier divorced.
But, after years of hearing how much married life would be so much better for me in terms of my health, I eventually started to wonder if it was possible to have the kind of relationship he was talking about - one where both people worked together and made life easier for both. (There's something very attractive about that idea, right?)
So, finally, I gave in and set up a profile on an internet dating site. I was totally honest and upfront in my profile, and consequently expected that no-one would be interested. (I'm an overweight, Christian minister, with teenagers and lupus and at the time was unable to work at all through ill health. And I said I was looking specifically for marriage.)
Strangely, there were men interested. Some I very quickly decided I was not at all interested in. But some actually seemed nice.
A year ago this week, I had my first date. That was with a very nice man, who I went out with for about a month. It didn't work out. We both had health issues and lived far too far apart to be able to keep travelling back and forwards.
I went back to the site and continued looking. I had lots of conversations with interesting people online, and even met a couple of people face-to-face.
About ten months ago I met Mr Wonderful. (Whether he will turn out to be Mr Right, I can't yet tell, but he certainly is one of the most wonderful people I've ever met.)
Now here's what my rheumatologist didn't take into account when he told me so often how important it was that I find a husband: you don't get married immediately. In fact, you don't get engaged immediately. There is this time, of unpredictable length, of simply dating, getting to know each other, establishing the relationship. Well, of course, you say?
Here's where the lupus stuff comes in. I have to budget my energy carefully. Seeing Mr Wonderful, as great as it is, takes energy. That means, instead of making everything easier and less demanding in life while I have someone to share everything with - what I have is all of those same responsibilities on my own that I've always had, and and additional demand on my time and energy. (Please understand, this is not a complaint. I love every moment I have with Mr Wonderful.)
Friends who understand the situation have tended to back off to allow me the time and energy to spend on establishing the relationship - but that means I miss out on the time I would otherwise have had with my friends.
So, if you have lupus and are thinking about pursuing a romantic relationship, what advice could I give you? Go for it! Just make sure, as with everything, you keep close account of the energy you have available, and budget accordingly.
And bear in mind, that there will be a time, of unknown length, when you are establishing a relationship not just sharing a life. Those of us who have been forced to look at our own mortality might be impatient with this kind of thing - because we don't ever know if we have time. (Remembering that women tend to be more anxious for a permanent commitment than men anyway, this can cause tension.) Try to be patient - if he is worth the commitment, he is worth the wait. If he's not worth the commitment, move on without wasting the effort of being resentful.