This column is relevant to people with invisible chronic illnesses, and semi-visible disabilities, and sometimes-visible disabilities and well as completely invisible disabilities. I’m trying to be inclusive of people rather than exclusive. If you feel like you might belong, then welcome!

Column 0 – Introducing your host

Who’s writing all this stuff? What qualifications do I have to tell you about invisible disabilities anyway?

Column 1 – What is an invisible disability?

What is an invisible disability anyway?

Column 2 – What’s So Special About Invisible Disabilities?

How is an invisible disability different from other disabilities? What extra issues do people with invisible disabilities face?

Column 3 – Crossing The Street

A personal experience of living with an invisible disability.

Column 4 – What’s an Invisible Chronic Illness?

What’s an Invisible Chronic Illness and how is it different from an invisible disability?

Column 5 – Writing about Invisible Disabilities

Why it’s important to talk and write about invisible disabilities as much as we can.

Column 6 – Believing In Yourself – 4 March 2001

Dealing with not believing in your own invisible disabilities.

Column 7 – Invisible Disability Explanation Fatigue

Dealing with that feeling you get when the 500th person asks the same silly questions about your invisible disabilities.

Column 8 – Being A Disability

How to not just be your disability, being yourself first.

Column 9 – Practical Invisible Disability Activism – 26 March 2001

Standing up for your rights as a disabled person.

Column 10 – Invisible Guilt

Invisible Guilt is picking up society’s idea that invisible means less bad. How to get around this guilt.

Column 11 – “How Are You?”

Answers to this eternal questions when you’re never, “Fine, thanks.”

Column 12 – Internet ID Resources

Where to look on the Internet about further resources for people with Invisible Disabilities. [I've taken this one down because it's so out of date - there are lots of places to look now that didn't exist in 2001.]

Column 13 – Simulating IDs – 1 June 2001

Contrasting how to simulate paraplegia and CFS. Amusing description of simulating CFS in there too.

Column 14 – Disabilities that can be both Invisible and Visible – 10 June 2001

Describing disabilities which can be both visible and invisible – but still just as debilitating in both states. And what links disabilities like this to invisible disabilities.

Column 15 – A Rant – 17 June 2001

About proposed Australian government reforms which could turn out to be very badly for people with invisible disabilities.

Column 16 – Invisible Disability Stigma – 25 June 2001

Looking “perfectly healthy” like people with IDs do, but being disabled, is a very easy way to get stigmatized.

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This article was originally published at Invisible Disabilities: An Extra Challenge and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

People with invisible disabilities are often stigmatized because they can’t do things that non-disabled people can do. People with invisible disabilities (IDs) will often have to say, “No, I can’t do that” or need some accommodations, when they look perfectly normal. This can be a struggle for both the disabled person, who may be hesitant about asking, and for the person who asked in the first place, and isn’t sure if the person is lazy, disabled, or just trying to play with their mind.

Invisible disabilities often make exercise very difficult, so many people with IDs put on weight. And in today’s culture, people who are overweight are stigmatized and looked down on. I have been talking to one person who struggles with several IDs and needs to use an electric scooter to get around. She has had people literally stop her in the shopping center and tell her she’s lazy to be using the scooter. Assuming she’s just using the scooter because she’s fat, and not because she’s disabled. Prejudices like this is something the ID community desperately needs to address.

Another stigma that people with IDs face is using disabled parking spots. On one Fibromyalgia mailing list many people reported not using their disabled parking permits to park in the special places unless they were absolutely desperate, because they couldn’t face the looks and finger-pointing and even face-to-face confrontations that happen when an apparently healthy person steps out of a car in a handicapped zone. I recognize that these people think they are doing the Right Thing but people need to learn, still, that not everybody who’s disabled has a wheelchair, a white cane, or missing body-parts.

Some invisible disabilities, such as Chrone’s Disease, Ulcerative Collitis and IBS, force sufferers to make frequent – and often urgent – trips to the bathroom and possibly even the occasional accident. This can lead to teasing of the sort that, “Only little kids have accidents” and severe embarrassment for the sufferer.

Laziness is probably the number one stigma that people with IDs face. When you look like a normal person, but spend much of your time in bed or lying on the sofa, it’s a simple step for people who don’t “Get It” to assume you’re just being lazy. It’s hard for them to understand it’s not laziness but necessity that makes people with IDs to less that normal people. If I was just lazy, folks, I wouldn’t be skipping my friends’ midwinter party and going out to the library, as well as skipping the housework. I wouldn’t be crying about being left out – again – of whatever my friendship group are up to this weekend. If I was just lazy, I’d do the fun stuff.

So if you see somebody doing, or being, or acting a certain way and your first response is to think they’re putting it on, think again. Maybe they are doing their best, trying with all they have, and this is just how they are. Be gentle with your assumptions and slow to criticize. If you wonder, perhaps even go up and ask if the person would like a bit of help! Most people with IDs would be happy to explain what’s going on, and perhaps you could do something to aid them.

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This article was originally published at Invisible Disability Stigma and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Warning: This one’s a personal rant.

In my opinion, the Australian government is usually a fair and reasonable one, whichever party is in power. They have a fair record on things like human rights, a social saftey net, anti-discrimination legislation and other things that concern me. They also, of course, have their bad points, but this article is not about politics. Nor is it an advertisement for Australia, although I may write one of those one day too.

No, this article is about one particular leglislative reform that the Australian Govermnent may be trying to bring in which would seriously damage the social safety-net given to invisibly disabled people in our country. Amongst a raft of other reforms they want to introduce to our welfare system is this one:

Letters and forms from the patient’s doctors will no longer be used in Social Security Determinations. Medical information about the client will be gathered solely by an appointment between the client and a Government-appointed doctor.

This is the scariest thing I have heard in a long time. And those with invisible disabilities are the most at risk for it.

Imagine, you’re a government-appointed doctor changed with weeding out the people who are trying to rort the system. You possibly get a pay rise or a bonus or something for finding “cheaters” even. First patient, a paraplegic. He wheels himself into your office in his green and blue wheelchair complete with spinal X-ray showing which vertebra is smashed to pieces. You ask him if there is any movement possible, no, none. You test his leg reflexes, they’re absent. Obviously not faking it. Okay, he passes.

Next patient, an old man with arthritis. He hobbles in, he’s nearly old enough for an old-age pension but not quite, so you need to assess his level of disability. He’s obviously disabled though, with swollen, hot, red-looking joints. You test his grip strength, very low. No cheating here, he passes.

Next patient, a college-age young woman. At first glance she looks perfectly healthy. At second glance you notice she does look a little tired, perhaps a slight case of depression? You look down at her application. Under “Disability:” she has listed “Chronic Fatigue Syndrome”. You know from experience that people trying to cheat the system often write “Chronic Fatigue Syndrome” on their forms, and skepticism starts to form in your mind. You look up again, noting her rosy cheeks and neatly combed hair.

You ask her for a list of symptoms and she says nothing, pulling an entire page of writing out of her handbag and offering it to you, “These are the symptoms I get regularly, sorry about the writing but one of them is short-term memory loss so if I just try to say them I forget.” You try to keep an open mind, but writing down symptoms is a classic of the cheaters, it saves them memorizing a list. The handwriting is slighly hard to read, but you start off, reading them out. “Fatigue, Muscle aches, headaches, nausea, allergies, diahorea, constipation” You raise an eyebrow at the listing of both of the last two, surely the one excludes the other. You mention this to the girl and she stammers for a second then says, “I get different ones on different days …”. You finish reading the improbably long list (wouldn’t anybody with that many symptoms look sicker? She walked in okay!) and get her up on the examining table. A brief examination reveals no obvious signs of disease, back at your desk her grip strength is normal.

You look down her list of medications and notice a common anti-depressant listed, you ask her about it and she looks confused for a moment before brightening, “I take it to help me sleep, that’s right”. No way, this one’s got to be a cheater. Or just a bit depressed and looking for a way to get out of going to work. “I’m sorry,” you say, “But you seem perfectly fine, I’ll have to mark you as healthy.” The girl bursts into tears at that, confirming your suspicion about that touch of depression. You usher her out of the office and call, “Next”.

This situation, by the way, is not uncommon. Patients with Chronic Fatigue Syndrome have a notoriously difficult time obtaining benefits they deserve, even in Australia. How much worse off are they going to be when, having finally found a local doctor that believes in them and knows about CFS, that doctor’s advice is ignored by the Department of Social Security?

CFS is far from the only invisible disability that people are going to have trouble with. How about Fibromyalgia, Multiple Chemical Sensitivities and Hypermobility Syndrome? Or a host of psychiatric but not-easily-detectable disabilities such as PSTD?

If I get called up for review, I’ll definitely plan on using my wheelchair that day, and bringing the few bits of paper that do demonstrate abnormalities in blood and urine test results. Along with a witness, preferably my doctor herself.

After that I’ll just have to cross my fingers and hope for the best. I hope my review isn’t soon.

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This article was originally published at The Australian Government: A Rant and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

But apart from people’s part-time wheelchair use, are there actual disabilities which vary between visibility and invisiblity while still being disabling all the while? The answer is a resounding “Yes!”.

For example psoriasis usually manifests itself as a very visible skin rash where the skin grows thick and scaly. This is the visible side of the disability, but up to 1/3 of people with this condition also have psoaratic arthritis – very painful joint problems – which may manifest even when their skin is clear. Arthritic joints may not be as visible as a skin condition but they can be far more disabling. So psoriasis can be both an invisible and a visible disability!

Another specific disability which can change from visible to invisible (but still be disabling in both states) and back again is Multiple Sclerosis. A friend of mine has at one point had weakness of the legs requiring her to use a cane or crutches – making her MS very visible. At other times these symptoms have gone into remission and she has had invisible symptoms such as vertigo, memory loss and bladder problems – equally severe and very disabling, but invisible symptoms.

A person with a prosthetic leg may experience something similar on a short term basis where they look normal while standing still (assuming the wearing of long pants) but are noticably disabled with a limp or abnormal walking action once they start to move. But they’re still as disabled whether they’re standing still or moving.

Anybody who watches knows that if you have a visible disability, people go out of their way to help you. They will hold doors open for you, make sure you get a place in the elevator, lift things from high shelves, help you not have to wait in queues. Anything to make life a little easier. This is just one of society’s gentlenesses at the moment.

But society hasn’t progressed to knowing that invisible disabilities are out there in the community yet. Some people take a walking stick or crutch or cane they don’t quite need, just to make their disability more visible and therefore receive the special treatment that visible disabilities rightly command. In a society that accepts visible disabilities and ignores invisible ones, it’s the only sensible thing to do, really.

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This article was originally published at Sometimes Visible and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

One of the big problems that people with invisible disabilities have is explaining what it feels like. It’s a never-ending battle! Here’s an what happened when somebody tried to simulate a visible disability, and how I think the invisible disability of CFS might be simulated.

To Walk, er, Wheel A Mile …

One of Australia’s prime comics and radio personalities spent a day during the paralympics in a wheelchair!

Don’t worry, he wasn’t hurt. Andrew Denton took up a challenge put to him by Brett Nielsen – one of Australia’s paralympian wheelchair basketballers – to spend a morning in a wheelchair and get a taste of what life on wheels was like.

To his credit, Denton did a good job. Live on radio and followed around by TV cameras from one of Australia’s prime-time current affairs shows, he went about his daily routine. Confined to a regular hospital-style wheelchair, Denton trouble getting over the curb and into his office for his spot hosting early-morning radio on station MMM. He couldn’t get through the door into the men’s toilets or, once he made it inside, reach the waist-high urinal (we can only assume he turned the cameras off and cheated, as no wet spot was evident afterwards!). After his shift on radio, Brett Nielsen took Denton on a tour of the city, showing him how to get up escalators in a wheelchair (which Denton declined to try), how to go up and down steep curbs (including an amusing shot of Denton falling out of his wheelchair), and how to ask complete strangers to do your banking because the bank is situated at the top of a flight of stairs.

Denton admitted, at the end of his morning in a wheelchair, that he had learned a lot about life on wheels and how inaccessible our cities really are. It was a wonderful publicity piece for paraplegics and other wheelchair users, and hopefully those who watched and listened to Denton’s adventures are now more educated about paraplegia and associated conditions.

Simulating paraplegia is, relatively, easy. You put the person in a wheelchair and don’t let them move. This isn’t exactly the same as being paraplegic, but it’s a good first approximation.

But oh, how glorious it would be if we could give a prominent media personality all the limitations of a severe invisible disability for a day, a week, or an hour.

Here are my suggestions on simulating Chronic Fatigue Syndrome for an afternoon:

The days before the test …

Create the bone-crushing fatigue with severe sleep deprivation. The subject is forbidden to sleep for three days before the test date. This will accurately reproduce the level of CFS fatigue which is far beyond “just tired”.

Provoke the muscle pain by having the subject play a strenuous contact sport, rugby is suggested, and moving heavy furniture in confined spaces on the morning before the test. Also, the subject must balance a heavy weight on their head for half an hour to exacerbate pain in the head and neck area.

The common CFS symptom of hypoglycaemia – low blood sugar – can be induced by not permitting the subject to eat anything on the day of the test.

Immediately before the test …

Low blood pressure in CFS is caused by low blood volume. This can be induced by having the subject donate a pint of blood approximately 15 minutes before the test. This will create dizziness, lightheadedness and sudden unexpected collapse when standing.

CFS patients feel often as if “gravity has been turned up”. Create this sensation by having the subject wear a lead bodysuit, including hood, so that every movement is more difficult and energy-sapping that usual.

Muscle twitching and spasms are difficult to reproduce. An approximation can be achieved by attaching several TENS (elecrical muscle simulation) units to the patient and setting then to trigger at random intervals.

As the test commences …

Enhance brainfog – the CFS effect of feeling like the brain is wrapped in cotton wool and nonfunctioning – by administering a sedating drug as the test commences.

Open a bottle of extra-strength drain cleaner and have the subject inhale deeply several times as the test commences. This will perfectly reproduce a sore throat and, after a delay of a few minutes, the sinus and nasal congestion that CFS patients are prone to.

Nausea can easily be created by exposing the subject to the fumes of meat which has been kept in a warm place for approximately a week.

During the test …

Introduce random sharp pains by having one of the test-givers follow the subject around and hit them with a sharp hammer at random locations on their body.

CFS patients are frequently oversensitive to light and sound so play loud music and have the test administered under extra-bright flurescent lights.

Standing still can cause the blood pressure of a CFS patient to drop enough that they grey-out or faint, so the subject is not permitted to stand still during the test, but must be moving around or sitting down at all times.

Lastly, hire half a dozen Highly Respected Experts and the subject’s closest relatives and friends to follow the subject around and explain to them that it’s really all in their head and that they aren’t trying hard enough.

Perfect.

Okay, not quite perfect, but very satisfying to all those millions who live with under-publicized invisible disabilities!

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This article was originally published at Simulating IDs and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

I’m never, “Fine, thanks”. Oh, I say I am, just like everybody else, but I never am. It’s just that most people who ask don’t really care what you say. It’s just convention, like saying, “Hello” and “Goodbye”. So I say, “Fine” and mean, “I’m in pain, I’m exhausted, I’m scared, I’m not sure how I’ll survive the day”.

This is especially hard for those with invisible disabilities because we look, “Fine, thanks”. You can’t see our pain, our fatigue, our eight million other symptoms. This makes getting the message through harder.

So what can you reasonably reply when somebody asks how you’re feeling? Firstly, you need to know why they’re asking. People say, “How are you?” for a lot of reasons, and it means different things at different times. I mentally sort these people and instances into classes:

• The person doesn’t really want to know, they’re just using, “Hello, how are you?” as a synonym for, “Hello”. People doing this might not even know you’re invisibly disabled. Just say, “Fine” as your own synonym for, “Hello” and continue the conversation.
• The person who isn’t sure if they want to know or not. I try to find something positive to say in response, just to avoid getting the, “Stop being so negative all the time” lecture. Even if it doesn’t answer the question, this often works. It can lead to slight non-linear exchanges such as:
  

  “How are you?”
  “I had fun watching the sun come up today”

  Strangely enough, people only vary rarely seem to notice that you didn’t answer their question, so this works fine. This case also works for people who sort wants to know, but hates, “all your negativity”.

• You’re not sure what the person wants. In this case, I generally say, “Well, do you want the short answer or the long answer?”. The short answer is usually something that’s true but glosses over things, something like, “Well, my back’s worse today but I’m okay emotionally”. The long answer is, well, the long answer – you might want to offer them a seat.
• People you really know well, special people, those who really understand and care about you. The people that mean it when they ask how you are. An answer like, “Have you got time and energy for the whole sorry mess, or do you want the short version today?” would be appropriate. You might like to remind them how much you appreciate their friendship while you’re at it.

Of course, people don’t really divide neatly up into four classes. But those are some general trends that I, and others with invisible disabilities, have noticed.

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This article was originally published at “How Are You?” What to answer when you’re never “Fine, thanks” and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Society Says: I can't see it, it can't be that bad. If it was really bad you'd have a wheelchair or green spots or something, it must be trivial.

Invisibly Disabled Person Replies: *cringing* Umm, oops, sorry ...

How easy it is to pick up society’s idea that less visible means less bad!

I have a secret for you …

… ready? …

It’s Not True! Invisible disabilities can be just as disabling, just as painful, just as symptomatic as visible disabilities. And even more so, in some cases.

A famous AIDS researcher, Dr Mark Loveless, researched the almost-always trivialized disease Chronic Fatigue Syndrome at one point along with his regular AIDS research. He found that on the Karnofsky Scale, which measures patients’ ability to do things, that his severe CFS patients often measured lower than his AIDS patients who were in their last weeks of life! His CFS patients, an invisible trivialized disease, were often sicker than people with the very visible (HIV might be invisible but AIDS patients in their last weeks of life definitely look disabled) disease of AIDS.

The sad part is that even the very people with invisible disabilities buy into the myth that invisible means less bad. Most of them have been called “lazy” so many times they’ve internalized the idea that they could really do more if they tried. As a result, people with invisible disabilities often try to do things beyond their capabilities and actually make their conditions worse because of not trusting that they know their limits.

An example of this might be a Fibromyalgia patient not using the disabled parking bay he is eligible to use, because he knows he looks “okay” and feels guilty that people will stare and point or even yell at him if he uses the disabled parking bay. He therefore drives around to find a regular carpark. Eventually he finds one but has a 200 metre walk to the shopping centre, which is more than he can manage. He overdoes it walking back to the car and is left in bed, in severe pain, for four days as a result of his actions.

Is this society’s fault? Can we blame society for the internalized feelings of guilt and “it must be laziness” that many people with invisible disabilities feel? Sure!

So if you’re part of society, what can you do about this? Don’t assume that your first impression of somebody is all there is to see. Just as people in wheelchairs can sometimes stand up, people who can walk sometimes can’t walk far. Or people who can stand up may not be able to stand in a bank queue for ten minutes. Or people who look okay may have a heart condition, or a lung condition, or a whole-body condition, that means they can’t do stuff the way you can.

If you’re one of the people with invisible disabilities, what can you do about it? Try to throw off your explanation fatigue and explain to as many people as you can. Figure out a short, simple explanation of your condition(s) and try to give this out when people ask – it’ll pretty soon become obvious if they seriously want to know more details or if they’re happy with the short answer. If people really do want to know the long and detailed answer about what’s wrong with you, then they should also be happy to wait until you’re in a position where your disability lets you do it.

But the most important thing is not to lay a guilt trip on yourself about it. Don’t think of the unfolded laundry, the high number of days you’ve had to take off work, or the fact you needed the disabled parking bay after all. These aren’t things to feel guilty about! These are just things your disability causes or affects. Being disabled is not something to feel guilty about. And, as I stressed above, invisible disability is just as real as the visible kind.

Be gentle with yourself. Don’t listen to society’s bad messages. Believe what your body tells you. Hang in there.

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This article was originally published at Invisible Guilt and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

You walk up to the train in peak hour, backpack with your books on your back. You’re hurting badly and your legs feel wobbly and weak. But you look okay. You look like a normal mid-twenties female with a backpack and blue jeans. You’re disabled but it doesn’t show. Welcome to the world of invisible disabilities.

You get on the train. All the seats are taken by business men reading the paper. You know you can’t stand up on the train for the 5 stops you need to travel. But how do you do it? I must admit I have resorted to sitting on the floor in trains because I was too shy/frightened to ask for a seat. But my recommended procedure would be to go to somebody looking fairly approachable (ie: not the pregnant woman or the old man who’s talking to himself!) and say something along the lines of, ‘I know I look okay but I’m disabled and I need a seat, would you mind?‘. If they ignore you, and you’re still feeling brave, then tap them on the shoulder and say it louder! I find that after this even if your chosen subject doesn’t offer you a seat, somebody else will. It does take guts though.

The other way around happens too, if you have a seat and you’re the youngest and healthiest looking person in the carriage and an old lady gets on with her shopping and everybody glares at you to get up and offer her your seat and you just can’t do it. Your disability won’t allow it. Simply say, ‘I’m sorry I can’t offer you my seat, I’m invisibly disabled.‘. People can try to make you feel guilty for this, but just because somebody wants to give you a guilt trip doesn’t mean you have to take it.

Another neat strategy I have heard about but never tried is to make up a pamphlet, sheet or business card. On one side, put some medical-sounding terminology about what’s wrong with you, “This patient has Ehlers-Danlos Syndrome, Fibromyalgia and Reflex Sympathetic Dystrophy”. On the other side put “The person carrying this card is unable to:” and a list of things you can’t manage, for example “standing for more than 2 minutes”, “walking more than 50 meters” and anything else you can think of. Once you have these show them or give them out to people in situations when you need your disability recognized. Giving a piece of paper is often easier than talking about your problems.

Don’t get me wrong, this stuff can be hard! Invisible disabilities aren’t widely recognized and taken into account yet, so each invisibly disabled person must become a sort of ambassador for all people with IDs. Helping each other educate the community. It might take a few years, but I hope they’ll learn. Each one teach one.

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This article was originally published at Practical ID Activism and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

When you are disabled, especially when you have multiple things wrong with you, it’s very easy to become those disabilities. Be nothing more than the sum of your deficiencies and problems.

I am surrounded by carers, doctors, therapists, support groups, capsules, pills, potions, powders, braces, sticks, wheelchair … I sometimes feel like I’ll disappear under the weight of them. Lost from sight forever. And nobody will notice, especially not the doctors and carers who see only what’s wrong with me, and never what’s right.

Sure, I am a person with problems. But I am just that – a person with problems. Not a set of problems with a person attached. I think the distinction is important.

I think it’s easy for people with invisible disabilities (IDs) to disappear under their disabilities for several reasons. Firstly, many invisible disabilities are medical in nature and require numerous doctor visits, hospitalizations, medications, and other things that constantly remind you there’s something “wrong” with you.

Also, people with IDs are constantly surrounded by people who are trivializing and minimizing what’s wrong with you, and denying how disabled you are. This means that to be treated in an appropriate manner, you have to fight to be seen as disabled. Most disabled people fight to prove that they can do stuff. As people with IDs, we more usually have to fight to prove we can’t do stuff. It’s easy for that sort of attitude to get inside your head, and then you really believe that you can’t do anything useful.

So, how to avoid “disappearing” into just being a disability?

I try to regularly remind myself that I’m still me under these problems. There is more to me than my own problems. Thankfully!

I can express this other side of me by writing articles, by chatting to friends, by playing music, by having people bring pizza over and having an “evening in”, by doing anything that doesn’t relate to disabilities. Unfortunately, the sicker I get the harder this all gets, but I still do my best to try. Even a short phone call with an understanding friend, one who realizes that I don’t want to just talk about how sick I feel, can make me feel more “normal” and more part of the “real world”.

If you’ve been a dancer and a rock-climber before you got sick/disabled, then obviously you’ll have to make some changes in how you occupy your time! Depending on your disability, you may be able to adapt the activities you used to do, or perhaps pick up some new interests. There’s always something though, even if it’s just watching a plant grow, or composing poetry in your head and dictating it to a friend.

I think it’s important to be more than just “a disability”. Everybody has skills and talents and interests of their own, even if they’re bedridden. Being able to be a whole person, letting all sides of your personality out is healthy and good.

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This article was originally published at Being A Disability and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

I’m worn out now.

I just attempted to explain to yet another person that no, Chronic Fatigue Syndrome does not just make you sleep all the time.

Narcolepsy is a disease that makes you fall asleep all the time, even in inappropriate places like at the dinner table. I know this because it runs in my family. However, CFS is not Narcolepsy. CFS makes you exhausted all the time, and it makes you hurt all the time, and it does a lot of other nasty things, but it doesn’t make you sleep all the time. Quite often it actually stops you sleeping, although you’re exhausted beyond belief.

Explaining Chronic Fatigue Syndrome is difficult because the name appears to explain the condition but is actually more misleading that explanatory.

Another difficulty experienced by people with invisible diseases is conditions that are simply complicated to explain. Usually things are hard to explain because of their range of symptoms – I rarely even try to get people to understand about Ehlers-Danlos Syndrome or Reflex Sympathetic Dystrophy or any of the more esoteric things wrong with me. It’s rarely worth the effort.

I feel like I “should” really be patient and kind and explain to endless numbers of people so that they will know more about it next time they meet somebody with the same disease, but it takes so much emotional and mental ENERGY and I don’t have much.

Is it okay to get sick and tired of explaining to people about my diseases, though?

Somebody suggested that I should make it into a macro or a form letter or something. Actually, I did that a few years ago (it’s here), but it doesn’t always seem appropriate to bring it up in conversation.

Somebody once suggested to me that I get small business cards printed out with the most significant symptoms one one side, and on the other side put major activities that I am handicapped in, for example “Unable to stand for more than 5 minutes”. I like the idea of having something that looks vaguely official to hand out, but I never pursued the idea seriously.

Sometimes if somebody seems to be “just asking” for the sake of politeness I try to fob them off with, “You probably don’t really want to know about that”, or, “It’s complicated…” or something like that. If somebody keeps asking after that they probably really did want to know and that helps with the explaining.

On occasions, if I’m not up to explaining, I tell people to ask questions instead. It can be easier to answer things than to try to remember all the right bits to tell people! And you might miss important parts when you only follow the questions, but at least you get a chance to correct some misconceptions.

I do at least try to be polite to people who want to understand. They’re streets ahead of the general public who accept the trivial/unimportant messages without question. If I really can’t explain I try to go back later and explain. At least most people try.

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This article was originally published at Invisible Disability Explanation Fatigue and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.