When I first started advocating I knew that honesty was the best way to get people's attention. However, being honest is hard especially on public pages, but I have chosen this tactic because I want others who have felt as isolated as I have, to be able feel as though they belong, that they are not alone.
BUT SILENCE MAKES ME MAD.
I acknowledge that not everyone see's my posts and I don't post everyday and I also acknowledge that there are a handful of people who do comment, some family/friends and followers of the page. But even so there are moments where I feel like I am drowning and I can post something about that and I don't get the empathy or even the support that I am craving and it's really upsetting because I didn't start sharing these posts with family and friends to continue to live in a bubble of silence.
I know at the end of the day, no one will truly understand my illness, unless they have it, or have something similar. SO this blog post is basically me saying I am going to pick up my act in regards to advocating, but also one to show you all that there are really simple ways to see if I am okay.
Saying things like this;
-How are you feeling?
- Do you need anything?
- Can I do anything for you?
- Do you want to talk about it?
- I don't understand entirely, but I am here if you want to vent
-When you are well enough, do you want to catch up?
I feel like people think I am expecting them to help me in ways they cannot, but a simple sentence that takes less than a minute to write, is really something that everyone can do. I am not looking for people to try and make me better, because there is no cure. What I am looking for is more support. I struggle daily to be able to function, some days more than others and I think people forget that because I am physically achieving more than I was a few years ago.
Some days I think the advocacy has only worked to the extent that those around me know I am sick and they've accepted that, but that is where they draw the line. It is much more than knowing i have a chronic/invisible illness. It is understanding that my illness is more than the name, it is more than the overwhelming fatigue, it is more than needing to lay down all the time. It is the muscle weakness, the sensitivity to light, the struggle to walk, to function, to do simple tasks like shower and get dressed. It is my whole body feeling like lead, painful glands, isolation, depression, tears.
It is watching everyone live their lives normally and you doing things differently or not at all. It is having your life robbed before your eyes and not being able to do a single damn thing about it except let it happen. It is watching your loved ones struggle to deal with an illness that they cannot take away, it is watching your boyfriend have to battle whether or not he should leave for a night of fun that I am not capable of, it is watching those around me try and accommodate my illness in day to day activities.
It is going through hell every day, only to realise that a SMALL handful of people will go out of their way to message you. Silence hurts, words matter. Things can change.