“I really know what you mean, I get it”

So how many times have you heard this, whilst it would be nice if it were true, it ain’t. No-one can truly understand what it is like to live with a chronic illness unless you have one or care for someone who has. If they do really understand, grab tight hold and never let them go, they are some of the most useful friends to have around you, both as  a warrior and as a carer.

The problem is that it is not just friends that say this, but family as well. Yet they are all the same, plenty of well meaning advice that really is not relevant to chronic illness. Statement in question is “you need to build up your immune system” really!! it is the immune system that is faulty and causing all the problems. Another one is, “get out and enjoy yourself” for a lupus warrior this equates to getting up and having your breakfast waiting for you. Exercise is the classic one, having a shower without falling or being in pain is the only exercise that can be done on most days.

So as a carer it might seem that you are fighting a losing battle most of the time, but then you will find someone who understands and will become close friends. They wont even mind when your warrior RSVPs to invites with “Maybe” instead of “Yes” or “No” because they will get it. For all the others there is MasterCard…………….sorry couldn’t resist, for all of the others just nod and smile.

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