When, how and with whom to have the talk

So you've just been hit with a ton of bricks and suddenly whatever mattered so much yesterday seems like the smallest worry in the world today; You've just been diagnosed with a chronic illness. Something is seriously wrong with you, the professionals who are supposed to have all the answers seem to know nothing and there is no easy fix to make you better. Whatever plans you thought you had made for your life are now meaningless because now you will have a hard time planning the next 6 hour period, never mind the next 6 months in advance. That job you worked so hard to move up in will now be put on hold, that is, if you are lucky enough to be able to keep it. Your friends and family will no longer be able to count on you to be there for them like you have been in the past because your condition is so unpredictable. Because you always seem to look healthy, even those closest to you may somewhere, deep down inside question how sick you really are and how much is a mere act for attention...

Now, the question is, how do you handle this? How can you begin to explain what's happening inside of you both physically and mentally when you yourself AND your doctors don't even know for sure? Is your boss thinking you're faking just to get a pay cheque to stay home? Is your spouse really thinking you're just lazy when they get home from work and you're laying on the couch... again... when there is a pile of laundry to do and a home to be vacuumed? Are your friends talking about you behind your back and judging you because you keep cancelling on plans because you're just not up to going out anymore due to the pain and fatigue that now consumes you 24/7? Is my family gossiping about me, using me as a piece of juicy news to gain sympathy for themselves when I am the one dealing with this alone? Will I ever be able to be a parent and have healthy children, and if so, will I even be able to take care of them? Does my partner want to leave me because I am now considered a burden, this isn't what they signed up for... 

STOP. 

Although all of those scenarios may very well be happening, in my experience, the only way to gain control of what others are thinking is to clarify the situation for them one by one. If we are confused and in the dark about what our own body is going through daily with our own chronic illness, can you imagine how lost other outsiders can be? It is our job to:
1-  Fill them in with accurate information about our disease and how it impacts us personally
2-  Manage their expectations of us now considering all the factors that may change throughout the day
3-  Accept help when it is offered and ask when help is needed so they feel involved in our healing process and not shut out. (This was so hard for me to do as a very independent person)
4-  Keep them aware of the game plan to show them that you are working towards a positive outcome and  not becoming a victim to your disease.

(Naturally, people are entitled to their opinions and some may think whatever they want to regardless of what you say or do, however the ones that count will usually respond well and appreciate the above 4 steps)

Another thing to keep in mind is how the ones close to us are feeling. Often times we are so focused on our own emotions that we can dismiss the feelings of our partners, family and friends. We can also misinterpret an indifferent response or behavior as a careless one when it can actually be quite the opposite. I know my boyfriend really thinks the world of me, but when it comes to my condition, he gets a little tongue tied. He asks me every day how I am feeling and how I am doing, but it doesn't get much more detailed than that. It is only when really serious things happen that I see him break down. At first I took his stone face for indifference, but after reflecting on it, I realized that he is trying to be strong for me. If he were to show his emotions every time I had a bad flare or a scary symptom come up, it would probably freak me out even more and nothing good would come of that. I know deep down he is very scared about all the possibilities that can come from me being chronically ill, my shorter life span, risks of seizures and complications, risks with childbirth, etc. and I can only imagine how heavy it is for him to carry all of this on his heart just because he doesn't want me to be worrying about him on top of everything else. The same applies for our family and friends, they are worrying even if they aren't showing it and sometimes that cold indifference is their defense mechanism put up to protect US. Make sure you think to ask your close ones how they are feeling about  you being sick from time to time too.

It took me a really long time to learn to open up and tell my family and then friends what was going on with me because I didn't want to be a burden and worry them when they had other things to worry about in life. Ultimately, they just got mad and frustrated with me because I wasn't being honest and they worried even  more. When I flipped the scenario and imagined it being my sister keeping this from me, or even a friend, I realized I would want to know 100% of what was going on so I could offer my support and encouragement and be there if ever I was needed, that's who I am. Realizing this, I slowly worked on changing my ways and sharing my daily struggles with my inner circles more and more, it was only fair of me to offer them the chance to give back and take care of me like I would them. Talking about things and letting the stress out is very therapeutic and I have been able to connect with many people because of my choice to share this part of my life with everyone.

So, what are your stories? Was it easy for you to tell everyone you were sick? Is it still a secret?