I’m sure some of my followers don’t appreciate me posting things about illness all the time. Living with something this debilitating, it is destroying your life and your livelihood if you don’t speak out about it no one will care and no one will do anything. Man you know me from the posterior there about my jury living with what I live with in the amount of things that I deal with you have no idea. My life is something that can simply not be summed up in words.
The amount of things that I face and a daily basis dehydration palpitations passing out..? Dislocations partial dislocations increasingly master pain the complications a feast for my diseases. Nothing could explain it nor fully hope you to comprehend what it is like for a day in the life of me. I could do my best to explain it through the casual post about a dislocation however that stuff happens to me a lot.
Everything that I live with is what it is and is in trouble and fixable not possible to even moderate
To raise awareness people must come forward share their stories. Let others know what rare complex diseases are. Shed a light on something that is so hard to explain most doctors are baffled. If this is not done it won’t change. Things will stay the same and people will continue to be passed over as drug seekers. When in fact the pain of a dislocation even with EDS can be extremely excruciating.
When people see chronically ill people post on the Internet and their post tend to resolve around them being unwell. This is what a life with chronic illnesses like. No we are not doing this to the attention seekers. If you think that, it is your thought and you are welcome to have it. But know that chronically ill, and invisibly ill people for the stigma. This is why many of us have started to talk about what our lives are like daily. We are scrutinized, many times viewed as drug seekers by doctors. Being told that we are attention seeking by sharing our story.
I honestly don’t think in my mind that it is attention seeking, it is something that is used to raise awareness for multiple diseases invisible illnesses important this is important. Every disease no matter how big or how small or how many people are affected by it they are all important. Every single person living is important. So why is it that instead of building each other up return each other down? Please think the next time you think about Rolling your eyes at someone’s post, commenting negatively, or view someone is attention seeking, simply think this, what if it was you sick with an invisible disease? What do you still post that negative comment
It’s easy to say if I was the one that was sick I wouldn’t be negative, talk about it, posting it online. I would probably still continue to work full-time and do everything that I love because no Disease could slow me down. In actuality you have no idea how you would deal with something until you were truly faced with it. It is easy for any of us to say how we would behave in any situation.
Speaking from the point of you that I am speaking from I have had eight diagnosis of disease, each time there is something new diagnosed I go through the grieving process again. This is a natural thing allow yourself time to grieve. I have had people comment that I am broken as a person. I may be missing two organs but that does not make me broken. I am woman a sister, daughter, wife, and will never be a mother. My path I have excepted it. I have excepted my journey is differentiated from other people’s . Have you excepted your path? Have you excepted your own journey?
In my opinion, I support people posting online about their struggles with chronic illness, genetic illness, mental illness, invisible illness, genetic illness, and any sort of illness. If we do not talk to one another and connect, how can we get better mentally? Hope is something I will always have no matter how sick I get.
I believe that it vital to raise awareness for rare and complex diseases. If you are advocating to raise awareness keep it up, you can do this. You are a fighter. Let’s make a difference together. It’s like Ghandi said, “you must be the change you wish to see in the world.”
I am truly lucky and blessed to be living life now. I survived cancer, I fight EDS, POTS, MCAS, perniosis, Raynaud’s, pancreatitis, jaundice, a bleed, and I will never give up hope.
I truly have hope that collective voices can make a difference. Sharing your story is important not only for you but for others. Warriors and fighters of rare illness you are not alone. Us rarities need to stick together.
Hopeful forever and always.