When you turn 21, your expectation is to get your "adult ID" and go to clubs and bars with your friends, drink on a Thursday even if you have to wake up at 5 AM the next day for work. Unfortunately, my reality, my 21st birthday, I was always exhausted, I fell asleep almost everywhere, my only dates were with doctors and the only mood modifying substance was the cocktail of 21 pills I was taking daily.
Now, you can only imagine how popular this was with my friends and how understanding they were. NOT. The fact is that I didn't "look" sick so it was easily accepted. Once I kept declining their request to go out and drink until 2 AM (when I couldn't stay awake past 8 PM) the calls stopped coming. I was left alone in a fast paced world.
Living in the city means you go broke if you don't work and you can't afford to live if you don't have a full time. So here I am dragging myself every day to work an 8 to 12 hour shift, squeezing in doctor appointments every week and being left in the dust by humans.
I've always sat back to think about how much easier it would have been diagnosed older, maybe after I had children and they were old enough to take care of me, or if I lived with my mother and I didn't have to pay rent. It is probably one of the hardest things to ever go through and you sit back and think how you're going to make it in this world, especially between flares. Now, at the age of 27, things haven't really changed, except for the fact that (some) people my age are now more settled down and the don't care too much about going out, they'd rather a night in. So I am now making friends, but it has been a lonely sevenish years.
What helped? I joined so many online forums, especially on FB and I started connecting with people all over the world that had RA. And indeed I found one of my closest friends who I've never met personally, but she's my "go-to gal."
I always hope that one day I'll wake up and it'll be gone, that I don't have to get an infusion every four weeks. That I don't have to get these extreme fatigue episodes that don't allow me to live. That I don't have to think 1,000 times about getting into a relationship, because who wants to put this burden on anyone? Or even feel bad for those people that want to be there for you, because they don't have to be.
Being ill is mentally abusive. It will make you break your own heart a thousand times over. It will make you do a lot of crazy things, especially on those days that you feel better because you want to do things you normally can't and then you suffer the consequences later. You sit and think about who you should tell that you have RA because people's reactions are hurtful, mostly because the reactions are dismissive due to ignorance of the disease.
At the age of 27 I have signed a DNR, have an advanced directive and a living will just in case something happens to me there are no questions on what I want done with me. I should be travelling, not signing DNR's or paying crazy copays.
I'm sorry if you thought this was going to be in uplifting post, but this is the sort of sugar coated version of the knitty gritty of my life.