Lupus, like many long-term conditions, is a waiting game. It can get better, and then flare again for no reason. The uncertainty of not knowing if, when or where your own body might strike against you next has been one of the hardest parts to get my head around. It’s been years and I still don’t have that worry under control.
When I was first diagnosed I had an excellent GP who told me he wanted me in for a chat “just to check how I was doing”. It told me the surgery was interested, that they understood that I had a lot to get my head around and that it was OK to ask the silly questions. I wish my GPs since then had been as good (I moved away from the area after my diagnosis to be closer to my family).
I still get anxious about symptoms most people wouldn’t. I go to the doctor more than my friends (although often it’s because I have actually got something that needs treatment). Part of me knows that it’s sensible given my history, but on those occasions when it turns out to be nothing I get hugely frustrated with myself for wasting the doctor’s time.
My symptoms flare up and niggle from time to time (they are at the moment in fact) but my blood tests generally tell me I don’t have active lupus so I live with it. The fact they can start up without being reflected in my blood tests makes me really scared that I’ll end up back at square one, struggling to get treatment again in the future. The memories of living in pain with no real hope for it stopping are much too vivid for me to be relaxed about this, much as I’d love to be.
So overall, anxiety is one of the biggest legacies of this whole experience.
I’m not ashamed to say I’ve cried writing these blog posts. I hate the thought that other people are going through it without the support they need. I hate the fact that they’re going through it at all actually, but there’s nothing I can do to stop that.
What I can do is shout about two things.
Firstly, how important it is to support someone going through this, whether they have the diagnosis themselves or they’re supporting a loved one go through it. Anyone can do this. You don’t have to be a medical professional. Give them the time and encouragement to talk. I know there have been (and still are) times I can do nothing but cry at friends or family, but knowing that’s OK helps.
And secondly, for all that my original GP did support me informally, I’d love for there to be more structured support to help patients come to terms with their diagnosis as part of their treatment plan. In my experience, the hospital-based staff are (mostly) kind, sympathetic and concerned. But it ends there. I wasn’t given any information about emotional support to help me adjust to the changes in my life they were telling me about.
Learning you have a condition like lupus has a huge emotional impact and the process of coming to terms with a change like this to your life needs to be better catered for by the hospital teams delivering the diagnosis. There’s a long way to go.