I found this this article I would like to share:
“It doesn’t make sense. I look fine on the outside. And, I’m so not fine.
Logically, I can understand why well-people seem unintentionally ignorant at times. Because I hardly ever look sick. The old adage “what you see is what you get” doesn’t apply to those with invisible illnesses. Some people will never understand how everyday tasks can be exceedingly difficult or even impossible for me. They don’t see me during the hours I’m at my worst, because that’s when I stay home in bed or spend time on my couch. They probably won’t see the baskets of meds on my shelves or the volumes of medical paperwork I work hard to keep organized. Well-people don’t know how long my morning routine must be to accommodate the difficulty of just getting my body going. Hopefully, people will only see me at my best…as a productive member of society, contributing in my own unique way. Because while I am sick, being sick is not my identity…”
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Many people have flexible or loose joints. They’re the people, maybe like you, who did gymnastics or ballet when they were young and are “good” at yoga. Their joints move farther and more easily than most people’s joints, so they often can do tricks like bending their thumbs forward until they touch their fore-arms. Sometimes these people are called “double-jointed,” and some may even have dislocated or popped their joints out of the socket. The medical term for joints that move too far ishypermobility, and the word for joints that are tooloose and move too easily islaxity…read more
Story from a first hand experience of a fellow blogger:
“The story of my battle with illness is a long one. And a difficult one to write, so here I will just summarize. It started over 20 years when I was a small child. But perhaps it would be easier to start backwards…”
Everyone has a story to share – this is what connects us to one another, no matter our family background or where we come from. No matter what you’ve been through in your life, telling your story is the first step to creating meaningful relationships and building a strong support system.
People with invisible illnesses are often misunderstood, blamed, mistreated and judged. When we don’t acknowledge the truth of such illnesses, we are telling these people that they don’t matter or that they have no value. How will people heal if others don’t want to acknowledge that they have an illness in the first place? Society needs to understand invisible illnesses (many of which are neurological-affecting the brain and nervous system) are like any other condition that affects a different part of the body. Until this happens, people with invisible illness will continue to be stigmatized.
By sharing our personal experience with illness, we hope to build bridges with others around us, so that they will know and understand us better. Hiding our illness can cause embarrassment and leave us feeling ashamed about it. There is no fault in being faced with an illness. It is our truth; and how can we form real relationships with others if they don’t know what we go through?
Read more and watch the video here: My Thoughts on Sharing Your Illness with Others
Every now and then I notice awful stories of people who have been left by partners when they became chronically ill or disabled. It’s shocking, but it says more about the leaving partner than about the ill/disabled person. I personally think it means it wasn’t really meant to be, no one wants to be with someone who can not handle it.
This article sums it up quite well I think, there are some similarities as in friendships that dissolves once someone becomes ill/disabled:
“I have noticed a trend in which husbands or wives, or boyfriends or girlfriends, tend to leave the person they “loved” behind. Their primary reason is that their partner’s illness became too hard or stressful on them, and they just could not take it anymore. They say they are tired of fighting, due to the insurmountable obstacles continuing to pile up throughout the course of their partner’s chronic illness. For us who have been left because of these reasons, there is one major unspoken truth that carries us on past this tragedy -Our partners, who were too stressed because of our illnesses, could never imagine the pain and darkness we both endure and overcome. While they are busy fighting with external forces, we are busy waging a war within, refusing to wave the white flag and surrender our lives.”
I found this article today, I think it’s a good read:
“Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to get better. No amount of medicine, doctors, surgeries, and procedures can fix you.
I think the reason why people today love to hear about cancer stories is because they are just that. They are stories. They have a beginning, middle, and an end. While that end may not be a happy one, people are satisfied with closure. But my story doesn’t have an end. And people don’t seem to like stories without an ending.”
Here is an excellent video you can share with people to understand migraines better:
This is a great article about loss, it is about when an online friend passes away, but I think it could also apply to loosing an online friend due to other reasons:
“It’s odd how we socially construct ways to live our lives. The invisible to-do or how-to lists that allow the word ‘should’ to creep into our psyche. When I go and talk or teach groups of people about ideas of grieving in non-linear, fluid ways of riding the waves of loss there is often a collective sigh at being released from thinking there is one way to react to unexpected life events…”
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“My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?”
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Read more: Spoon theory