Monthly Archives: May 2015

Annoying Memes etc




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!




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


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…

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For Parents with Chronic Illness


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.