The Coolest Cheat Sheet Ever For Lupus Caregivers
1. Don't ever say "It's all in your head" or "It's all psychosomatic" or even "If you just think positive, you'll get better"- Those phrases, and any similar, are some of the worst things you can say to anyone. I still feel a bit resentful that my mom has used these on me. Doctors shouldn't even say this to patients. There are far too many diseases out there that many people and doctors know so little about.
2. Practice patience- With Lupus, everything changes on a day-to-day basis. Just because yesterday they could do pretty much everything does not mean they can do the same today. This can get pretty frustrating for some people.
3. Learn everything you can about lupus from excellent sources- You can always check out my "Important Links" page for some excellent Lupie sources.
4. Try to understand what the patient is going through:- Every person with an autoimmune disease has to go through the stages of grief. They will also have to fight their way through "The Chronic Illness Symptom Cycle". When you understand these stages, you can be a little more sympathetic. You can't help them figure this out, but you can be the support system they'll need.
5. Find the happy medium between babying and neglecting- There are some lessons every Lupie needs to learn, and if you baby them, they cannot learn this for themselves. At the same time, there will be times when they are just completely incapable of doing something, and they will need your help.