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.
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,
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,
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
“After my post on using accessible toilets with an invisible disability went viral with over 2 million views, I knew I had to harness this amazing audience and do something good with it and so after spending the week talking to people with disabilities all over the world and also Disability Charity Scope, I am over the moon to launch More Than Meets The Eye, a campaign for invisible disability awareness.”
I often get asked ‘how do I find a good specialist?’ There are several ways to find one, but it is a lot easier if you already have a diagnosis, so I will start with what to do when you do not have one yet.
If you have been to countless GP’s and specialists and they have not been able to come up with a useful diagnosis yet there are a few things you can start with. You can start by joining a few general chronic illness forums (see the link below) and read other people’s stories and see if you have something in common (that is partly how I got diagnosed after being ill for a long time) and you can ask questions. Or you can Google your synptoms to see if you can find something familiar, but be careful, a lot of illnesses have similar symptoms and you could get overwhelmed! My advice is to be very sceptical. But once you have a slight idea of what your illness could be, you could join online forums or support groups and check it out more in detail. These groups and forums often can help you find a good specialist, they have reviews posted on doctors and links to medical articles as well. You can find them on Facebook but there are also non-Facebook groups and forums.
For those who already have a diagnosis, this is a good web site to check out: But You Don’t Look Sick
Good luck 🙂
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…”
“This is what I think disability acceptance means:
Facing what your abilities are and aren’t
Accepting yourself as already having value
Living your life now and doing things you care about.
Not putting your life on hold waiting for a cure”
To read more:
Part II about care givers:
It might have been a drastic change or a slow one, but things will be completely different than before. Maybe you can not do things spontaneously anymore like you used to, and that takes away a freedom that most people take for granted. For us it was quite sudden, I was already chronically ill, but I was much more able than I am now. We used to be able to suddenly decide we wanted to go out, and now I need to weigh up if it will be possible or even if it is worth the aftermath. So my partner goes out alone a lot. It’s good for him and good for me.
Carers can be wary of sharing their problems with the person in their care; this is because they think they do not want to burden them. But sharing problems can actually give the person you care for the ability to give you moral support. We should always let our care givers know how much we appreciate them.
If your carer is your partner and you had times together when you were not ill, try to find a way to preserve some of the relationship you had before you became ill/disabled. You might not be able to do the same things as before, like going for dinner, going to movies etc., but you can still watch movies together at home and discuss them. Or maybe you can play board games (they can be done online as well), read books together, discuss art or just talk about the things you really liked in the past.
There is a reluctance to tell people when someone has become a carer; it is a life changing and stressful event. The consequence is that other people would not even know when a carer needs help and that can lead to burn out or depression. If you are the one being cared for, encourage your care giver to share his or her thoughts with others.
Things might not always be the same; sometimes people recover a bit or maybe they completely recover. This depends on the illness/disability of course, but if there is a chance for improvement, remind your carer of this. I have improved a bit in the last year; we have been able to take 2 mini holidays and those have been great!