Hope this post is reaching you all well, or at least as well as we ever feel. Lately I have been thinking a lot about how I react to being judged by others and how hard I am on myself sometimes. I don't even know why I am so judgmental of myself; sometimes it can be directly traced back to the lupus and sometimes it is simply ridiculous. It is something that this year I am planning to try and work on even if it is just to be a little kinder to myself.
I know that there are many of us out there who have learnt the importance balance of when to say yes to things and when to give yourself a break - honestly I admire you guys so much as I am still somewhere on this path. I struggle desperately with worrying about the judgment of others which ultimately leads to me losing a little more confidence. However there are some things that I have learnt over the years and I thought I would share some of them with you. Maybe they will help someone during this tough acceptance process.
The stares from strangers
A few weeks ago I woke up with the worst malar rash I have ever had. It was everywhere and at one point I could barely stand to have clothes against my skin. Now I have had the red, swollen face before, but I think this was the first time that I have noticed people staring at me...and it wasn't just my face, it was the fact that I was walking with a limp and looked like I was about to collapse.
At first I just felt like crawling back into my bed and spending the rest of the day hiding away, because people were obviously judging me. However I had doctors appointments to get to and so I had to pull myself together. So I developed a plan of attack...when someone would stare at me I would simply smile back.
As I had no way of knowing whether people were being cruel or being sympathetic, there was no point in being nasty or defensive - plus I am not the kind of person to judge others for their actions. So I felt that by offering a smile I would either cheer up the persons day or make them feel like they should definitely stop staring.
I now use this tactic anytime someone decides to judge me for sitting down when I am on a busy train, I am walking with a limp or the rash appears on my face - it is just the way I am and hopefully my smile will brighten up their day.
When people don't understand my illness
One of the hardest things anyone with a chronic illness has to face are the questions...especially when people truly believe that sleep will cure everything. If I had £1 for every time someone told me to get an early nights sleep and I will feel better...well I would be rich by now. I am getting frustrated simply by writing about it. Trust me, if sleep was the cure I would be doing it right now and a lot of it, however I can understand why others don't get that resting does very little for me and will change nothing at all. I mean when you are fit and well, sleep is what gives you the energy boost you need; so how can others understand when this doesn't work for you.
I find handling certain questions really hard, almost like I am embarrassed by my answers. For example...when someone asks why I didn't go out with everyone...and I say I was too ill...I am almost embarrassed to explain myself as I know I will probably be judged for it. So I have had to learn ways to explain my reasons for being off sick, missing parties, missing events.
In general I have to be completely honest and realize that others wont understand fully what I mean - how could they? I will explain that doing too much could set off a flare up which could mean that I cannot work or live a normal life. Sometimes I will say that I was too unwell and offer to do something when I am feeling better. Being honest is the only way and it is also when you find out who your true friends are as they will not judge you for being a bit of a hermit.
I have also realised that if people do judge me for only staying for one drink, or not showing at all, then that is their issue to deal with and not mine as I am putting my health first.
Judging me for the way I have changed
This is probably the hardest judgment to overcome. I can sometimes beat myself down because I can't do the things I want to, or I haven't lived the life I had planned to when I was a teenager. The flip side of the above is that when I say "I'm sorry I can't" I will feel awful about it for days afterwards...the guilt can drive you crazy at times and then there is the reminder that you are missing out on something you really want to do.
This is something I am trying to find a way to stop as it is not productive and it wastes what precious energy I have. It is ok to feel guilty for letting a friend down, but why should I beat myself up for this, I cannot help it and if I could I would in an instant. So I am learning, slowly, to give myself a break and not push myself to do anything that I know will cause me issues in the future. I have started to put my illness first - not that I like too - instead of saying I am fine and risking a flare up. Maybe I am growing up, maybe I am just terrified of the flare up pain, but I am not letting the illness win the battle - in fact I am playing it at it's own game by not letting it win!
