When we are cronically ill, people that surround us can fall into incomprehention or say things that hurt us, like “but you don’t look sick”, “if yesterday you could, why can’t you today?”, “you are imagining your symptoms”, “why are you tired if you haven’t done anything?”. While the sick person can be hurt by these comments, it is very common that the other person either really doesn’t understand, and how can you understand something you have never felt, or they fall into impotence and frustration watching us be unable to do things when the cause is not apparent. If you could see lupus, as you can see other health problems, like lacking a member or a paralysis, others could, if not really understand, at least observe the incapacity to perform certain activities. Lupus is what is called an Invisible Chronic Illness. No one else, with just observing us, can imagine what is going on inside of us. They only have our word.
In addition, the symptoms are not always the same, so sometimes we can do certain things and other times we can’t, without presenting any apparent or tangible symptom. It’s logical that those others may think we are creating excuses because we really don’t want to do something or that we sometimes invent the symptoms. Unfortunately there is not much to be done about it. We have to be patient with those surrounding us and try to describe, as clearly as possible what we are feeling. Some will respect it, others will get offended thinking it’s personal against them. It’s frustrating, but we have all lost pleople that were close to us that have been unable to understand us. That is why I say we talk, we let the world know what happens to us, that lupus has a wider audience, for the more people that know about it, with all it’s complexity, we will have a greater chance to be respected if not understood in our limitations.