322,000. That is how many people are said to have lupus in the US.
Bloggers with lupus are constantly talking about awareness and education. But according to a study from 2012 there is a giant communication gap between lupus sufferers, caretakers and physicians. We all need to work together to fix this problem.
It starts with the patient.
But why do we allow lupus to make us into liars?
Sometimes we don’t speak of different parts of our illness because we feel judged:
The first time someone gives you a look that says they don’t believe you when you tell them you are tired.
Or maybe they cut you off mid-sentence when you try to explain a frustration with your illness.
When the pharmacist is practically tsk’ing out loud as you hand over your prescription for pain medication.
Yes, you try to eat well and exercise as much as you can. You aren’t just being lazy.
No, X Y & Z are not Miracle Cures for Lupus.
You have a rash, headache, and fatigue all in one day and you have zero reasons to get out of bed. But, this is the third day in a row.
Everyone gets tired, you should just deal with it.
Yes, you have to go to the doctor again this week.
You feel like a broken record.
It is an INVISIBLE chronic illness.
It’s never going to go away (unless they REALLY do find that miracle cure).
87% is a large number. We need to be honest with those around us. I’m not saying complaining about your disease every 5 seconds, but be honest when you’re really hurting and when you are really needing support.
You have to deal with it. Everyone around you has to deal with it. Which brings us to…
Caretakers and loved ones.
What was your first thought when you found out about your Lupies diagnosis? If you took some pathology in school you might have known a little bit, but most people have no idea what lupus is. Your loved one may be having some frightening signs and symptoms, but the diagnosis can be even scarier. This person will be dealing with this disease for the rest of their life. How are both of you going to deal?
Some hard truths:
78% of family and friends of those with lupus describe themselves as “very supportive”, however only half of lupus patients feel that they are “very supportive” and only 33% of their doctors feel they are. Unfortunately this says a lot about how family and friends of patients do not really understand or realize the severity of lupus.
I know noone is perfect. There is a relentless battering of varying degrees of illness, caretaking, doctors visits, different diagnoses, worries, life changes, and a multitude of unknowns. It can be rough on both the patient and the caretaker, as well. Though there is so much more research needed to be done, please find out as much information as you can on your own. It will help you to understand where your Lupie is coming from, what to expect, and to also help educate others.
And what of the physicians?
I can’t speak for them. 72 % of doctors said they were not aware of the severity of their patient symptoms. 72%!!!! Only we can change that, Lupies. We need to be our own advocates. We as patients AND caretakers need to be forthright with physicians.
I hope to see these numbers change in the future.