Here you go - another reason dealing with others can be difficult when you're fighting a chronic illness:
3) Some people will not know how to react
Let's face it - some people will be better at dealing with your illness than others will. Some won’t know what to say or how to say it. Others may fail to say anything at all. In fact, the people whom you expect to understand the most may be failing to do so at all. Perhaps you’d like them to acknowledge that you’re sick in the first place, because from the way they’re acting, it seems like they don’t believe you really are. They may show very little concern for your situation, interacting with you as if nothing has changed. When they do ask about lupus, their inquiries sound like accusations. The questions they pose about your job, household chores, or social plans just seem like opportunities to point out your failings. You’re struggling enough as it is to make sense of your newly limited abilities. Doesn’t their intuition tell them to have the decency not to bring it up all the time? You’re not capable of tackling this alone, but if they continue to exacerbate the problem, you may have no choice. You spend as much time defending yourself as you do fighting off the effects of the disease. Can’t they see the detriment they’re causing? They don’t have any concept of the pain and misery you’re forced to live with each day and, therefore, appear to have no compassion.
While there are many communicative blunders that can occur in any relationship, the interjection of a third party, in this case a chronic illness, can all but stifle an otherwise normal encounter. It may be impossible for you to fathom the insensitivity or inconsideration that others have toward your bout with lupus. But it may be just as difficult for those around you to make sense of how you’re dealing with the disease or to figure out what they should be saying to you, if anything. Now it’s up to you to figure out how lupus has affected your relationship. You need to consider the new boundaries that have arisen in order to reopen the lines of communication that have closed.
"Life in general and good relationships with other human beings in particular don’t have to be difficult. In fact, if they are, maybe you need to reevaluate your approach."
During your exploration, you might find it necessary to make significant changes in the way you relate to people (and to whom you relate). You may need to establish a set of ground rules for yourself or for others in order to avoid certain conversations. Perhaps you need to separate yourself temporarily from those who are struggling to adapt to your new life with lupus. It may be advantageous for you both to take some time and space to get used to the changes that are occurring.