Thanks for starting this thread @kitchensqueen.

Quote:

Originally Posted by kitchensqueen
I was diagnosed with lupus in the fall (after years and years of trying to pinpoint what was going on) and am still getting used to the idea of having this illness that will never really go away. On the one hand, it's a relief to know what's up and have a treatment plan, on the other hand - it seems like a life sentence of pain and fatigue.

Anyhow, I'm sure I'm not the only one with a chronic illness here on the board, so I thought it would be nice for us to have a space to vent, support each other, etc.

You're definitely not the only one. I have a chronic illness and it took a long time to diagnose. As you said, it's a relief to know what's up and have a treatment plan, but it's hard to know that I will have it for the rest of my life (as it's not curable) and to deal with the symptoms of the illness on an ongoing basis.

to you and all dealing with chronic illnesses.

 

Quote:

Originally Posted by HappyHappyMommy

Thanks for starting this thread @kitchensqueen.

You're definitely not the only one. I have a chronic illness and it took a long time to diagnose. As you said, it's a relief to know what's up and have a treatment plan, but it's hard to know that I will have it for the rest of my life (as it's not curable) and to deal with the symptoms of the illness on an ongoing basis.

to you and all dealing with chronic illnesses.

I hope it will be a useful thread! There are just so many ups and downs to living with a chronic illness that can be difficult for those that don't have one to understand. So if we can talk to others who are in the same boat, it might be helpful.

 

Quote:

Originally Posted by kitchensqueen
There are just so many ups and downs to living with a chronic illness that can be difficult for those that don't have one to understand. So if we can talk to others who are in the same boat, it might be helpful.

I agree. One of my challenges is answering the question "So, you're all better, right?" I've been asked it so many times that one would think that I'd have an answer by now, but it still throws me off. I'd be curious to hear how others answer this question.

 

I've actually not had that one come up yet, since my diagnosis is still relatively new and "public". One thing I have been getting a lot of is that really intense "So how are you feeling? No, really - how are you really feeling?" kind of questions. I mean, I appreciate the concern, but A. I don't need to be asked every single time we meet, and 2. if I say that I'm okay, then I mean that I am either actually doing okay that day, or that I don't want to have a big discussion about it. And then I feel guilty that I'm annoyed, because I should be lucky enough that people care enough to ask, and it ends up being this whole ridiculous cycle of annoyance and guilt in my head.