I’ve been all over the place emotionally over the last few days since having a new diagnosis aka a name to give to the collection of symptoms I’ve been experiencing. It doesn’t really make it any better, or worse, or really anything different. But doesn’t it?
Giving something a name makes it ‘real’. For invisible illnesses it already IS REAL for the people experiencing it and maybe also for the people close to them. They don’t need that name to know they are in pain, tired, sick and broken. Sadly though to many people around them (for some even their doctors) not having a name to put on it just makes it imaginary or an exaggeration.
Maybe friends and family assume you’re just overly sensitive or weak. Maybe your doctor assumes you are fishing for medication. Maybe your boss thinks you’re lazy and trying to play sick to get extra vacation time. I think at one time or another we all experience some kind of judgement from people who just don’t get what is going on in our bodies. Just telling them we are sick and tired isn’t enough to convince them that our symptoms are real.
What happens when you finally have a diagnosis?
Do you tell people?
Will they now understand?
Since my doctors appointment Mr. Mango and I have told our children that “mommy’s doctor now thinks she knows what is wrong and is giving mommy medicine to try and make it better.” He has told his mother and I have told my father since both of them knew about the appointment and had asked for an update.
The kids have been super understanding (for 9, 5 and almost 3), Mr. Mango’s Mom is super concerned but thankful it isn’t worse and my Dad, well, he’s honestly reacting better than I would have hoped. He was never great at acknowledging things he couldn’t see or understand (go figure for a man of faith).
What about everyone else?
I know many friends and family have in some way been effected by my illness over the last couple years. Being cancelled on last minute, forgotten text messages or vague explanations to certain circumstances. Some of them know a little about what is going on from the migraines to dietary changes for my IBS or simply that my joints have been acting up and I have to decline certain invitations for fun, but the majority probably just think I’m being self involved or uninterested.
Do I go around calling them all saying “here I have a real excuse now?” Do I make an announcement in bulk like a pregnancy notice? Do I say nothing at all until someone asks or it is necessary?
While I yearn for a little understanding and even to have people acknowledge that I may need a little help or at least someone to talk to, I am scared of the sympathy.
I don’t want to be treated like a sickly person. I don’t want the invitations to parties or plans to stop. I don’t want people to start assuming I can’t do anything or have any fun.
I know I am sick. I know there are things I can’t and shouldn’t do, especially during a flare up.
I also know that I feel alienated and alone enough. I am worried that if they ‘know’ what’s actually wrong that it will get that much worse. Or maybe I’m worried it won’t matter and people still won’t understand and like no one cares either way.
I really don’t know, I just know I don’t want to feel like I’m in hiding and I don’t want to come off like attention seeking.
I just don’t know how to come out.