Family and Friends

The Lupus patient may have to bear the burden of the illness alone, either because partners do not see a real and deserving condition, do not understand the nature of lupus or believe it is their life that is being damaged and thus turn away.

It can be difficult for parents and/or children to appreciate and understand what the patient is going through, and why constant tiredness is so often the central feature of this mysterious condition.

Friends too, and business colleagues, will not easily understand lupus, particularly where there is little if any visual evidence of unwellness. Many LUPUS UK members have found that the charity’s Bookmarks and handouts quickly enable other persons to obtain a sufficient understanding of lupus so that the patients position can at least be viewed with a little knowledge and sympathy.

You can watch some people with lupus talking about how they explain their lupus to others in this video:

“I have been very open with friends, family and work colleagues about my lupus. I find it exhausting having to explain the condition to people over and over again, but I guess it is the only way to raise awareness. I don’t want people’s sympathy; I just want a little understanding.”