No Room for Judgement When Living With Someone With Lupus
My loved ones do not have lupus, so it can be very hard for them to understand what I go through each and every day of my life. Things like the fear I live with and the pain I endure are not ever-present in their minds.
I am actually very lucky because, for the most part, my husband is very supportive; he is what keeps me going during really horrible flares. He has been by my side through emergency room visits, appointments with many specialists, and even some unpleasant treatments. He is my rock.
He is also my second marriage. My first was the polar opposite of the relationship I now have — I did not have love or support back then, so my lupus and my life was hell.
The fact is that without the right support from loved ones who live with us lupus warriors, life can often feel like it is more than any of us can withstand. This endless battle takes a lot out of those who fight it.
It changes us, steals precious moments, and alters our physical appearance at times. Pain is a terrible thing to live with on a daily basis, so is the fear that accompanies lupus — always worried what next life-threatening health challenge may be.
So, if you are living with someone with lupus, you should realize it requires endless patience, support, love and understanding. It requires that you do not judge situations you are not physically experiencing for yourself.
It requires you to be an advocate for your loved one, not another obstacle they must overcome or manage. It probably requires way too much of you. But, your support is needed.
What Not to Do
If you live with a lupus warrior, there are things you should do, and things you should decidedly not do, to make their lives and their battle easier for them. You may think what you do and say has very little control over the intensity of their flare or the ease of their day, but it does.
As I said, I have been on the flip-side of where I am now. I have been judged, condemned, and left without any support during times when my life was threatened by lupus. I have a pretty complete list of what you should not do if your love done has lupus.
Do Not Judge or Compare
In my first marriage I used to be compared to others and how they looked and handled illness on a regular basis. My ex would remind me that he could keep working even when sick (from a head cold), or keep going with only a few hours of sleep.
He would compare me to women who were thinner than I was (they were also not on steroids) and if I gained two pounds he would notice and would comment on it. It was like even though I had extreme health issues, I was expected to make it appear that I was not sick.
My mission was to express no feelings of pain, fatigue, or ever gain any weight. I should also say, I never got above 140 pounds except when pregnant, so the weight thing was an excessive lack of support on his part.
If your loved one gains some weight during a flare, or cannot keep up with normal activities, do not compare or judge them as weak or lazy. This hurts a lupus warrior at a very deep level.
Do Not Blame Them for Medical Costs
Nobody likes to see that hospital bill arrive with several zeros on the end of the balance due. But, you would not blame someone for having cancer, right?
Next page: more on what not to do when living with someone with lupus.