Need help getting people to understand my disease

Okay so my Crohn's disease has been active and unresponsive to treatment for over 3 years, with a brief period of relief after my surgery last Dec to remove the damaged part of my ileum. The crohn's has now diseased and damaged my ileum again already. On top of fighting the Crohn's symptoms I also have Colitic arthritis, depression and ADD. I've been on Adderall for the past 3 yrs to help the ADD and it also is kind of an off label treatment for the disease related fatigue I have. I recently missed my monthly appt to get my rx and had to go without it for almost a week. I had severe withdrawl symptoms and being a stay at home mom, I could barely function to take care of myself and my 3 yr old son. It was not a fun week. Anyway, I just wanted some help with better explaining what i'm going through to other people. Here's what happened-

I recently saw a private conversation my sister had with her boyfriend about me that just ripped my heart out. She said that i'm lazy and neglectful to my family/household. She'd slept over one of the days I was adderall-less and had seen how I was. She went as far to say that I am just lazy, my house is a mess, I don't take proper care of my son, I over exaggerate my Crohn's, I have a "problem" with Adderall (even though I take it as prescribed) because I had withdrawls from not taking it, and basically that i'm a lazy bad mother who's addicted to speed. Her boyfriend (who is my husbands best friend and rents our extra room) agreed with her and expressed his disgusts with me as well. It really destroyed me. It's so frustrating to defend myself. While most people who are flaring or have active disease can rest, I fight to get out of bed and spend my day alone chasing a toddler around and trying to keep a decent household. I don't know how to get them to understand how I feel. How every day is a battle against myself, my body and my mind. How can I at least describe or explain that I am just exhausted and not lazy? Or a good way to explain why active autoimmune diseases make you so fatigued?

I was wondering how you came by the private communication as well. Not that I'm judging you for it, but if you're not meant to know about it, it will obviously make it almost impossible to talk about - unless you come clean.

But your sister and her b/f sound like they're not worth the effort of trying to convince, tbh. If they have that little sympathy, there is probably not much you can do to make them sympathetic. Some people are just not very nice. If I got irrefutable proof that somebody felt like that about me, I would not want to see them ever again. That's just me. I'm not saying cutting off contact would be the right thing to do for everybody, but it is probably how I would feel.

I know it's probably not much consolation, but most people here will know how you feel, including me. Crohn's is draining.

He may have agreed just to move the conversation along without starting a fight. I do that sometimes, even if I vehemently disagree with someone. If I don't think I can change their minds, or don't have the energy to try, sometimes I just nod and smile and make encouraging noises so they move on, all the while keeping my opinions to myself. Things like that are complicated.

I don't know what to say about your sister. Maybe she just needed to vent? It's not easy being related to us Crohnies. In any case, I think you should talk to her about it. Just say "You left your facebook (assuming thats what it was) open and I saw your conversation about me with ___. It's been bothering me a lot, and I want to talk about it." You'll probably get a better explanation if you just let her talk and don't interrupt, hard as that may be.

I am sorry for your situation. I don't like when people disregard your condition because they just don't get it, or just think they know better. I guess it's what we have to deal with eh?

Ditto to what Question Everything said! Life is too short. If it weren't the Crohn's, they'd nit-pick at something else. Sometimes you just back off and allow people to grow up, and if they don't, they don't.