A specialist once told me we all have crosses to bear in life. He proceeded to tell me that lupus was my cross to bear just as hair loss was his. Somehow this just didn’t seem fair back then. To be honest it still doesn’t seem fair.
I can appreciate that everyone has his/her own trials and tests in life. And no two people will experience things exactly the same way as perception is a funny thing. We are shaped by our experiences, understanding and interpretation of words, sounds and sights. So it is possible that to this doctor his hair loss was just as traumatic and terrifying to him as hearing I had lupus was to me.
There are days that lupus is a “minor annoyance” in my life. It’s there, but it doesn’t impact my daily life too much. I can manage doing what I want to do without too much concern. Those are the days I understand that my specialist’s comment best.
There are days where lupus is in full control of every outcome. Including will I be able to get out of bed, or what happens if after I’m out of bed I have no more energy? Those are the days I want to march back into the specialists office and show him that this cross is much heavier, much harder to bear than how I perceive his. Of course those are the days I haven’t the energy to actually do anything, but it’s the thought that counts right?
Some else once told me that if I had to choose between my cross to bear versus another person’s I would gladly pick my own up again. I understand part of that in being that we do tend to go back to that which we know. But I’m somewhat certain I could find a way to rock a scarf or custom wig better than how I manage to deal with the fact that some days I just can’t do things.
Does lack of hair make you feel inept? Inadequate? Worthless? I struggle with these words, words I say to myself on the days when I really should be showing the most compassion to myself. I know it’s unfair of me to have this type of self-talk going on, but I suppose I repeat what I have heard said from society in some way or another over all the time of living with lupus.
If I were in the same position as that specialist so long ago, I would hope I would respond with compassion. I hope I would be able to reach out and create an environment where the other person could feel s/he could lay down that cross, if only for a moment, or at least take a rest while we find a way to make things work better.
Granted I know that there are dangers to caring too much, to worrying too much and becoming to close to things. However, in that moment, all those years ago, what I needed to hear most was that yes lupus sucks, and yes we will find a way to work through this. Instead a felt alone, and also somehow responsible for soldiering on as best I could without giving into the exhaustion or pain. In other words, lupus was diminished and it was up to me to carry on trying to appear “normal” because after all we each must carry things that are heavy for us.