Do Not Blame Them for Medical Costs
Lupus is not a choice and its impact to the household finances is not something someone should be blamed or feel guilty about. I was told constantly what I “cost” the family — how well off he would be if he was not with me.
Lupus guilt is already a natural thing that occurs for those of us who fight the battle, so we do not need to be brought further down by attaching a dollar figure to how guilty we feel.
Do Not Complain That You Are Tired of Their Pain
This was the worst for me. I went through a period of time where I had painful attacks that were later discovered to be pancreatitis. Lupus would make my pancreas swell and the attack felt as if something inside was exploding.
The pain was much worse than all four of my labor/deliveries of my children — and I made it through all of them without any drugs or epidurals. I am not weak.
This was so much worse. During one of the attacks my ex was driving me to the ER and a wave of the pain hit me. I could hardly breathe and I honestly feared I was going to die.
I made the mistake of saying as much. His response was that he was sick of the pain I had and he wished I would just go ahead and die.
I get that it is very hard to see someone in such pain. Maybe you feel helpless and have no idea what to say to support someone in these moments. But do not let fear or helplessness evoke a horrible response to come from you in these moments.
Show compassion and if you can’t, then simply say you are sorry for their pain and suffering and leave it at that.
Do Not Expect a Cure
So, while it is true we all would like a cure for lupus to be found, the fact is there isn’t one. There are no health shakes or supplements or miracle medicines that make lupus vanish permanently.
Even for those who enter remission, another flare or resurgence of the disease is a constant threat. So, when your loved one has been feeling better, than suddenly is stricken by a lupus attack, do not express that you thought it was gone or cured.
This makes a lupus warrior feel as though they somehow disappointed you — even though you should have known it can always come back, and probably will at some point.
Do Not Over-Book Activities and Obligations
This is one I still battle with at times. It is easy to say we will take it easy, but then schedule something to do every day. With lupus, even when you are doing well, overdoing it can cause serious flares or exhaustion.
Do not expect your loved one’s abilities and schedule to be business as usual. Let them take the lead as to how much they can take on each day at home, at work, and even while on vacation.
Do not expect them to be able to be out late, drinking and socializing if they express that they do not feel up to it. Do not schedule activities without discussing it with them and checking in on how they feel.
Those who love and live with someone who has lupus do not have it easy. But, it is important to remember that no matter how difficult it feels for you, it is much harder and more painful for those who battle this terrible disease.
Think before you speak and don’t let your frustrations with the illness spill out onto your loved one. Your words and actions matter and can make a lupus warrior’s life easier or more of a challenge. You get to decide.