Do your friends and family "get it"? When I say this, my question is, do they understand what you're going through? When it comes to chronic illness, not everybody can understand the experience. Now, I'm not talking about short-term illness, or a surgery that repairs you to almost normal condition followed by a reasonable recovery, ...I'm talking about long-term, life changing, body changing, painful, chronic illness - causing problems that significantly restructure your lifestyle while sending you down a road in life you never even imagined.
I've noticed that generally, three types of people "get it". People who have experienced a chronic illness of the same magnitude, people who have witnessed chronic illness in someone close to their heart and felt their pain, and people who are highly empathetic types.
Why do some people "get it" and others don't? In our telephone based support group's discussion yesterday, I briefly mentioned this and I thought I'd talk about it more here. When you have a chronic illness, after a while, you find out that not everybody can really handle seeing it or even hearing about it. For some people, it's frightening to see you because you represent a stark reality to them, the reality that it could happen to them. They too could get sick and lose everything. For others, there's the the lack of understanding about some illnesses, especially if they aren't well known or are controversial. Some others don't mean any harm, they just don't have even the most remote idea of what you're living with.
...so what can you do? Where does this leave the person with an illness, where does this leave caregivers, or friends who do understand what's going on? Well, you have to realize and accept that there are those who you can count on to understand and those who you can't count on to understand. You can give information such as websites, books, or television specials to people to see for themselves but that doesn't convince everyone.
Once you know who will "get it" and who won't, you can save yourself a lot of grief but turning your attention and energy toward those who will support you. I truly hope you have a network of people in your life who understand what you're going throuigh. But I know many of you find yourselves with less friends and family supporters now than you have had at other times in your life.... so spend time with the people who do understand you because they are truly a treasure and you will find them a tremendous source of inspiration, hope, and warmth.