Author Archives: livingwellwithchronicillness

About livingwellwithchronicillness

I'm just a random person with a few chronic illnesses who likes to blog. I have Ehler-Danlos Syndrome, POTS and a few other things. At the moment I am quite housebound so I decided to create this blog. Will update my profile when I'm a bit more inspired :)

Annoying Memes etc

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Sometimes I see things like the above picture posted on people’s walls or Pinterest. There are still people out there who believe in ‘mind over matter’ and other of such stuff (replace the word stuff with gross word of own choice) It really angers me that these people seem to think that everybody can just ‘heal’ themselves with their thoughts. I wonder how that works, how does one heal a disability or illness with their mind? I have an acquaintance who actually thinks that I can heal my genes! Seriously, she said to me: ‘you are so positive, I am sure you are healing your genes with your positivity and you will get better’. Now if only I could! I would be super healthy and rich as well!

Friendships

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One big advance of being disabled or ill is that it automatically weeds out flaky and nasty people. In some way I am glad I was already ill when I entered adulthood because that meant I did not have a group of established ‘good friends’ who I started to loose once I got ill. It must be really hard when you see long time friends falling away one by one the moment you get ill or disabled. It is something that happens to so many people, nearly daily people post stories about this topic on forums.

That does not mean I have not encountered some bad reactions, or that my friends all have been great friends.
A long time ago, when I was not yet diagnosed, but already very ill, I had a friend who asked me ‘if it wasn’t in my head’. Another thought I faked it because they thought I must be ‘lazy’. Yet another one , who herself was always ill, thought ‘I should push through’ because that was what she always did, without success I must say. For explample, one day she disappeared for a while to the bathroom and when she was not coming back I got worried and I found her curled up on the floor, in immense pain. Yet, nearly 20 years later she still tries to ‘push through’ even though her illness has progressed a lot. I would not know how she would treat me now, because I have not seen her for ages, but I suspect maybe better because I now have a ‘proper diagnosis’ (she still doesn’t have one herself) Somehow a ‘proper diagnosis’ can change people’s perception. But it is awful for people who still have not find out what is causing their illness (I am thinking especially of the people diagnosed with Chronic Fatigue Syndrome, they are often not taken seriously even though they are very ill)

I think that a lot of people have a misconception of what people with chronic illness or disability. They see them as a burden, as people who would be a constant negativity and people have literarily told me that ‘the negativity of the disabled/chronically ill brings them down’. I am not sure what negativity, maybe the reality of something coming so close, the realisation that this could happen to themselves one day.
However, what they fail to realise and will miss out on is the mental support and wisdom their ill or disabled friends can give them. People with illness/disability are often much more understanding, compassionate and patient than ‘normal’ people and willing to lend a listening ear to their friends/family and support them mentally. I see this as the strength of the disabled and chronically ill people, I hope that other people will see this too and not run from their disabled or ill friends.

I found some interesting articles I would like to share with this blog’s readers, I will post them in the coming days.

Surviving and thriving in college with a chronic illness

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This is a useful article for people who are thinking of going to uni. I never finished uni, I had to drop out after a few months because I was too ill (and the brain fog didn’t help!) but things are maybe a bit different now, more help available etc. And nowadays there is also so much you can do online as well.

Chronically courageous

Going to college is a big transition in anyone’s life. It’s a period of changing, gaining independence, and growing up. When you are living with a serious chronic illness, and you experience this transition, it can be more difficult to adjust to and cope with than the average person.

A little over a year ago, I was starting my freshman year of college, and this transition was one hell of a (miserable) trying time. My senior year of high school had pretty much been spent on home instruction, and I was so dependent on my parents for pretty much everything. Needless to say, the day I moved in, I was scared to death, and cried so much leaving my family that I think there are still eyeliner marks on my mom’s shirt.

My freshman year turned out to be one of the best years of my life, and despite the…

View original post 1,804 more words

For Parents with Chronic Illness

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For the readers who are parents:

“Wouldn’t it be nice if we could just write a letter to the world, expressing everything we’re too polite to say, and that could be the end of all our awkward encounters? Well, a gal can dream, right? Yet things aren’t usually so simple in real life. Actually, things tend to get quite messy when you’re a parent with a chronic illness (or two, if you’re like me).”

To read more,
click here.

Link: The Perception of Invisible and Chronic Illness

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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…”

To read more,
click here.

The Ugly Truth of Bad Day with CFS… But its ok!

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This sounds all too familiar, hard days just suck, badly!

Gluten Free Adventures & M.E

Today has not been a good day in fact that is putting it quite mildly…But thats OK!

When I say I have had a bad day I don’t think people really get it, and before I was a sufferer of this ridiculous illness I wouldn’t have understood either.

Friends, family co workers and pretty much most people you come into contact with only see you at your best, where you grin and bare the pain or other symptoms.

I hate letting people know how bad it can get sometimes and the only one who really sees this is my partner, who really is my night in shining armour! This is for a variety of reasons from not wanting to seem weak, feeling embarrassed not wanting people to feel sorry for me or think of me as their sick friend.

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Don’t talk about it, don’t tell anyone and pretend to be ok

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Wondering who else was brought up this way? These words were often spoken to me when I was a chronically ill kid. I was also told that if someone asked me ‘how are you?’ that I should lie and say ‘I’m fine’, any other answer was considered ‘rude’. I still have no idea why that was considered rude if you say that you’re not ok, or that you’re in pain, depressed etc. Sadly society expect people to put up happy fakery, that hasn’t changed much since I was little.

But I also wonder if there was something else to it, maybe that it would reflect on my parents if I gave an honest answer, maybe they thought it mean I wasn’t brought up well, that people would think me a rude kid? Or were they thinking what people would wonder about me, about why I was not well? I have no idea if my parents ever talked with friends about the fact their child was ill, but I doubt it. After all, doctors couldn’t find out what was wrong with me, so my own parents thought it was in my head and that I was just a rebellious teenager.

I suspect this has happened and still happens to kids who are ill, where the doctors fail to diagnose them. It is quite common to be misdiagnosed, especially with illnesses like dysautonomia/POTS and Ehler-Danlos Syndrome. But I am sure it happens with other illnesses too.

How does that affect people when they are adults? I can not speak for other people of course, but I am still affected by it year and years later. Whenever I go to a doctor I expect them to give me a blank stare and say they don’t know what’s wrong with me, or that it is in my head. I expect to not be taken seriously at all. Even though in the meantime I have met plenty of good doctors. Problem is that this issue with doctors wasn’t only in my childhood, but most of my adulthood as well, it’s something that still is very hard to come to terms with and has sort of created an expectation of how doctors will treat me.

I’d love to hear stories of other people and how this affected them. Or maybe it doesn’t bother you anymore? Tell me 🙂

 

Don’t talk about it, don’t tell anyone and pretend to be ok