I am just sitting here thinking - May is Lupus Awareness month and what should I write about that? Then it dawns on me - - - there are so many companions, spouses, parents, friends of Lupies, and they must wonder to themselves "what can I do for her/him?"
You really wanna know what you can do for your Lupie?
You can hold their hand. You can just sit quietly by their side when they are having a bad day - I know that it helps me, just to know that someone is there and truly cares about me, even if they can't do anything to take away the pain or the fog.
You can READ - read all about the form of Lupus that your Lupie has. Just the fact that you are getting educated, helps us know that you are really "there" for us.
When we are having a brain fog or slurred speach day, you can be patient with us. Do NOT say "are you on drugs?" That breaks our spirit and makes us want to keep everything inside. We want to run and hide.
Go to our doctor appointment with us. Our brains are operating on "Lupus Time" and we don't catch everything the doctor says. We walk out of most appointments more confused than before our diagnosis. That time when everything was up in the air and we were trying to explain to the doctors how we were feeling and it was like they didn't hear us. We need you to be our ears, so that a few days after the appointment; when we start absorbing the information - you can help us fill in the blanks.
Keep a list of our medications, diseases (because we all have overlap diseases) and ALLERGIES in your wallet. That way you ensure that we are prepared for any emergency - because I can tell you, in an emergency situation, our brains turn to total mush.
Support, empathize, educate yourself, help us physically and emotionally. Do NOT pity us! Pity doesn't help us and it doesn't help you either.
More than anything else - - - BELIEVE US! If we are telling you about what is going on or acting strange (fatigue, strange symptoms, muscle cramps, brain fog, new pains, etc.) - don't question whether we are really having that symptom. We have been through enough with doctors trying to pinpoint the source of our illness - we don't need your disbelief to add to our already painful and lonely existence. It is one thing to question the types of symptoms or what they feel like, but please do not question whether or not we are really feeling them.
We live in pain and confusion and sickness. We do not need the guilt trips.
I hope this helps to give some insight to you caretakers out there.