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Lauredhel is an Australian woman and mother with a disability. She blogs about disability and accessibility, social and reproductive justice, gender, freedom from violence, the uses and misuses of language, medical science, otters, gardening, and cooking.

This author has written 1617 posts for Hoyden About Town. Read more about Lauredhel »

41 responses to “Stop and think: invisible access for invisible disabilities”

  1. tigtog

    The wally asking you to fetch your own chair!

    You know, that whole uni parking permit story would make a great short film. It’s such a pearler exemplar of How Not Thinking Is Not Helping.

    I remember doing disability assessments for patients following neurological/orthopaedic impairments, they often also had some invisible disability problems: passersby would often speculate how ramps, rails, resurfacing etc would be just a waste of money because if they needed “that much” help they should just be in a nursing home. As if nursing homes wouldn’t cost a hell of a lot more than a few modifications around the home! (But people in nursing homes are also invisible)

  2. Artemis

    This is a great article ““ illuminating and helpful for understanding a whole bunch of things. It gives me an awareness of experiences I haven’t had, but have wondered about. Thank you for taking the time to explain it all.

    I have a good friend whose mother has similar symptoms who went through nearly 15 years of the medical mill with no relief. She was told everything you can imagine (it was all in her mind was the most common). By chance she was switched to a new doctor in the 15th year who, upon hearing her long explanation of what she had been through, told her she probably had Lyme disease. He tested her for it immediately and there it was. No one had ever bothered to wonder if she had an identifiable disease ““ they just busied themselves treating the symptoms and telling her she was a hypochondriac. She still has most of the debilitating effects ““ many of those you describe. It sucks.

  3. Mindy

    I feel like screaming on your behalf. I feel sick knowing that this is happening all the time. It seems unbelievable that services for the disabled and chronically ill don’t even provide a freaking chair.

    I really like the spoons analogy. I can’t imagine what life would be like with only a limited number. Hopefully someone will make a breakthrough soon and find out what causes your illness so you can have all your spoons back.

  4. Doodle Bean

    Thank you for describing my life so eloquently. I’ll print it up and distribute it to the “it’s all in your head” types. That way they’ll have to use their spoons while I spare mine.

  5. hipparchia

    spoon deficit! i like it.

    i too am learning to live with this chronic fatigue shit. i’ve gotten reasonably good at managing my own activities, carefully spacing them out like you say, but it’s still hard coping with other people using up your spoons.

    People with invisible disabilities should have equal access BY DEFAULT, and not have to spend their time constantly educating people about their illness in order to get through the day

    yep. and yep.

    one of the things i’ve finally learned: the world almost never stops spinning if i just up and say, very politely, right in the middle of whatever, “i’m sorry, i have to leave now” and then do so without further explanation.

    good manners doesn’t require one to put up with assholes, nor does good manners require one to explain anything to anyone. one is merely required to be polite and civil. one is not required to be a doormat. i find it helpful to remember this when somebody else is using up my spoons.

    about depression. depression may not be the cause of the fatigue, but having your life inexplicably curtailed like this can sure bring on depression. i did for awhile go through a pain management regimen, trying [under a doctor's care, not on my own!] combinations of various anti-depressants and pain medications. i eventually gave up on the anti-depressants, but the pain drugs were lovely and provided a much-needed respite.

  6. kate

    Beautiful explanation. Similar to what I would have written a few years ago had I not been too damn tired.

    Congratulations on staying at uni and getting the access you need. Learning to pace yourself is hard but necessary. For me it was the point when I started to get better. I still take care not to plan too many things for one day, but changing the bed isn’t a big deal any more, and cleaning the bath wont wipe me out for the next day. An exercise physiologist was most helpful, and told me to record what I was doing. Start small, laughably small (walking to the end of the street and back) do it for a week then increase it by a tiny margin. Never increase the activity level until you wake up with some energy the next day. Gradually you start getting more spoons and dashing round the corner for milk isn’t a big deal anymore.

  7. NTE

    I’m a new reader, but I just had to say what a wonderful, well-thought-out post this was. I’m so sorry to that we share the devestating effects of this horrible disease, but I applaud both your ‘coming out’ and your premise that invisible disabilities certainly have their own, unique challenges that need to be overcome. A wonderful post.

  8. Lauredhel

    Thanks, NTE. I read your BADD post. You really find out who your friends are when you get sick, don’t you?

  9. Cristy

    Another great post. Thank you!

    I got CFS when I was 16 after failing to recover properly from gladular fever. For my final two years of high school I was really unwell – your spoons analogy is perfect actually: for my final two years of high school I had very few spoons available to me.

    Fortunately for me, I found a great GP very quickly and my school were very accommodating. During my particularly bad periods I would only attend one class per day (and then go home and collapse exhausted in a heap) and they pro rata-ed my marks for me so that I could still complete year 12 and get into Uni.

    I won’t offer you any advice on how to get well. I got well through sheer luck, while my brother still suffers despite having tried everything. Well meaning advice can get really old after a while…

    I will wish you all the best though. I admire you for doing what you do do (particularly these great posts).

  10. Burrow

    OHMYGOD! This is exactly how I feel and I think that the spoon metaphor is spot on. I’ve been afraid to that I can’t get disability parking because I only have a mental illness, but some days I skip class because I’m too depressed to walk to the bus stop, get off the bus, and walk to class. On days like that I don’t think I have any spoons at all. Thank you for this post.

  11. Burrow

    When I did a post about going on a mood stabiliser I had an awful troll who kept telling me that I couldn’t call myself a feminist since I supported the drug companies and that I should try herbal remedies instead. (Like I hadn’t tried that first.)

    Those people suck.

  12. Kathy Houghton

    The Thief of Many Lives

    The Reality of living with Chronic Fatigue Syndrome –or–
    Jeesh… why didn’t the doctor tell me all this stuff !

    Until you read “The Thief of Many Lives” you too may have questioned the validity of Chronic Fatigue Syndrome as a real illness. It is VERY real, especially for us the sufferers and our caregivers. The credibility and validity of this disease has long been a most difficult message to convey to our Government, Physicians, Healthcare Professionals, friends, families and general public.

    What makes this even more challenging than how we might physically appear is the inappropriate name given to such a serious and debilitating disease. Consequently, one of the worse things someone can say to a person with CFS is how well we look on a particular day … we must be feeling “better” … “better” than what? Death? Unfortunately, CFS victims generally do not feel better than death … warmed over or otherwise!

    Lengths of time go by, month, seasons, and then years when all of our reserve energy is used simply to eat and breathe and those are the “good” days. Unfortunately, not many see this as most people with CFS are left to suffer behind closed doors. Unexplainably, our cries for awareness, and validity continue to fall upon deaf ears. WAKE UP AMERICA !

    CFS is at epidemic proportions destroying lives and affecting millions of people worldwide.

    May 12th is International CFS Awareness Day. Please make your voice be heard. Inform others about the tragic impact this illness is having on you, your loved one and our nation.

    BE AWARE OR BEWARE … As you could be writing this letter from your bed next May 12th.

    Read The Thief of Many Lives here:
    http://kathy-mcspage.blogspot.com/

  13. andrea

    A few summers ago, right in the middle of my MSc programme, I was hit with Mono AND Lyme. Taking a shower was exhausting. I kept falling asleep in statistics classes, and in the lab where I tried to work. Putting thoughts together in any of my research analysis or writing, or even learning new concepts, was like stringing beads while wearing heavy ski mittens.

    Even after submitting a letter from the doctor to my department head, he couldn’t understand why I couldn’t get things done, and when he did see me around, why I was staggering around and looking like “death warmed over”. He was of course, operating on the Willpower/ Mind Over Matter principle, where all one really needed was just More Determination. What a nut. And this was even in a biological science, where you’d think they would have some kind of clue!

    I got over the Mono and Lyme, although I have joint issues now that may or may not be related. A couple of the most important things I learned from that whole experience were tied to Paula Kamen’s lovely book, “All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE”. One important thought is: “There is a difference between getting cured and getting healed.”
    Another is: “Acceptance is not the same thing as resignation.”

    I also got a crash course in how little empathy some people have in real life, compared to the words that come out of their mouths.

  14. skepticlawyer

    My post of the week.

    I’m dyslexic, which doesn’t stop me doing stuff, but does create chaos reasonably regularly (along the lines of ‘gee you’re scatty, that meeting is next week, not today’).

    Thanks very much.

  15. kactus

    Oh, that spoon analogy is perfect. I have a congenital heart disease (hypertrophic cardiomyopathy) that has caused my entire heart muscle to harden and become less flexible. I too plan chores days in advance. Some mornings I wake up and just know that it’s not going to happen. Instead of beating myself up about it, now I force myself to live (unhappily) with an unmade bed.

  16. Jess

    How I love that people are writing about this. I have lupus, and it looks like I came out right around the same time you did:

    One of my readers pointed me to your post, and yes, oh yes, the spoon theory is perfect.

    Thank you for your openness.

  17. Spoon Theory « hogwash

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  19. Alice

    Hi,

    I found your post while searching some articles to show my boyfriend about understanding/living with chronic fatigue (he’s very supportive, but doesn’t quite ‘get it’ and I think sometimes gets frustrated at how little I seem to achieve each day).

    I’d like to thank you for such a well written description of life with chronic fatigue. You explained so well many of the issues that I have also experienced, particularly regarding the ‘invisibility’ of the illness. It is something that is very difficult to explain to people, especially when so many tell you it’s all in your head or that you’re lazy, or that you don’t want to get better etc.

    On an aside note, when I got down to reading the comments I realised that I’ve read some things you’ve written before (mainly as comments on other people’s posts), as you’re a friend of at least one of my friends on LiveJournal. It’s a small world I guess.

    Thank you again for such a wonderful article. I’ll definitely be passing it on to my boyfriend. Hopefully it gets across some of what I’ve been unable to articulate clearly myself.

  20. Lauredhel

    Hi Alice! Oh, yes, I do know you from elsewhere – we have mutual friends. Small world, as you say.

  21. Alice

    I’ve friended you on LJ. I hope that’s ok. We seem to share a few passions/interests.

    Small world indeed. Have we met IRL?

  22. Lisa Copen

    What a wonderful post and so encouraging to others. I’ve lived with rheumtoid arthritis since the age of 24 (14 years now) and still think the “invisible” part of the illness is one of the most difficult aspects. I hope you will be a part of National Invisible Chronic Illness Awareness Week – [URL removed] It’s a wonderful opportunity to continue to encourage others!

    Wish we could all start “SPOON COLLECTIONS” and have people be able to give them to us or pick one up whenever we are on vacation, huh?

    Bless you!

    Lisa Copen

    [Ed. note: URL removed as I found it indistinguishable from spam. Thanks for dropping by! L.]

  23. Aaron

    This has to be one of the most eloquent personal accounts of CFS that I have ever read. It’s such a shame that you don’t use your permit and park in the handicap spaces, but it’s very easy to understand why. People will stare at you as if you’re cutting them in line. You shouldn’t let those other people’s reactions stop you from doing what will make your life easier. You need to save yourself a spoon when it comes to going into a building. Thanks to commercials and other advertising, at least you can say, “I have Chronic Fatigue Syndrome.” when someone glares at you and they’ll probably understand that you don’t have to be physically deformed to need to be close to the entrance.

    Still, you shouldn’t let their judgments keep you from making your own life easier. It’s hard enough. And by worrying so much, you’re kind of increasing the gap between normalcy and invisible disabilities.

  24. Lauredhel

    Thanks Aaron. Happily, parking at the places I usually go (and the times I usually organise to go to them) is rarely an issue – I can often get a spot five or ten spaces away from the disabled parking, which is not a drama for me on a good day. And I just don’t go out and about on the bad ones.

    The last thing I ever plan to do is disclose my medical diagnosis to random strangers on the street. In the case of any in-your-face type heckling, which I haven’t yet encountered, I’m more likely to yell that I’m being harassed and could someone call security please.

    (Aside: just to let you know that I count two “You shouldn’t”s in your one short comment. Shoulds and shouldn’ts, when it comes to other people and the way they deal with their disability, can have a tendency to get my hackles up a little. They’re not up now, but I thought you should know.)

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  27. Burrow

    As my friend says “Stop shoulding all over yourself.”

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  29. amandaw

    Wow. Wow.

    I have to plan things in advance too. Changing the bedding has to be done -with- my husband, because it’s too exhausting on my own. Even “making” the bed is something I rarely do.

    Showers are my “biggie.” Not only is it vertical time (even with the shower chair, which has been a HUGE help to me) it’s a long ass time being vertical, under hot water (cold = PAIN) which makes you drowsy, and it’s a LOT OF WORK. Washing my hair is a LOT of work, arms over my head and pushing, pushing. Washing my body is a LOT of work, pushing, pushing in awkward places. Then after I get out of the shower I have to get dressed (such a task, bending and pulling), dry my hair (holding my arms over my head again…) possibly put on makeup, and then go wherever I meant to go. Only now I never shower before leaving somewhere anymore — I’ve learned better. I only shower twice a week during my healthiest times. I’ve been down to twice or thrice a month in the past, during my worst times.

    So, showers are planned. I have Shower Days. I do NOTHING else that requires any physical effort those days. If I’m feeling well maybe I will, but I don’t plan on it, because chances are I won’t be feeling that well.

    And the pride. Pacing is key. It took me years to learn pacing. Which interlocks with spoon theory in pretty neat ways. It’s true, life is a daily battle plan. And I don’t mean that in the watered-down way it’s come to mean. I mean, you actually feel like you are micromanaging a WAR, a war against the world, fought with your body. Surveying your resources, plotting a path, assigning resources to different activities, counting your “spoons” and trying to account for when you might be able to count on have a few more and when (such as after my showers, when my legs are visibly shaking and I can’t stand anymore) you know you can’t count on having any, in fact have to -schedule- recharge time…

    And the pride is hard to get over, realizing I CAN’T DO THIS ANYMORE! I can’t live the life I used to! (The water is muddied here for me because I’ve had it my whole life — it was never “triggered” — so I never had the wild youth some people are at least able to look back on…) And you have to realize: I can’t do everything I want to be able to do anymore. I’ve given up on a BA myself — it’d take me 10-15 years and I’ve just decided it’s not worth my energy. Not that I don’t want to learn (oh how I miss my time in college) not that I don’t feel these things are incredibly important and useful, but I have to concentrate on things like making myself lunch. Washing my hair. Feeding my cats.

    And the depression thing! Ugh. I was once dismissed by a ob/gyn (male, of course) (he was filling in for my normal gyn, a true saint, who was sick that day) as having PMDD — primarily mood-related (and DEFINITELY a legit disorder, but not what I was complaining of in the LEAST!) — when I complained of severe, disabling (in the fetal position in bed all day) menstrual pain. Oh, I still want to slap that man.

    Wow. Thanks for linking back to this. And for listening to the rambling. ;)

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  33. blue milk

    I don’t know I missed this previously, I thought I was a loyal reader here. Thanks for pointing it out to me.

    All I can say is How On Earth Do You Manage Motherhood On Top Of This? Mind boggling.

  34. pockafwye

    I just wandered onto this post from the interwebs. Your Spoon Theory is absolutely spot on. It describes what I haven’t been able to put into words properly myself. I’ve said to my Mister and others that I need to cut thus-and-such activity short because I’m running out of brain. Or I’m paying for the day before, so I won’t be able to do whatever we’d planned. But running out of spoons… rationing spoons… going into spoon deficit… Utterly brilliant and easy to explain.

  35. pockafwye

    Sorry for posting twice. Just re-read (brain fog strikes again) your post and realized that the Spoon Theory wasn’t yours originally. I followed your link to the original page and gave it a read, and am grateful for having found it here.

    That said, as someone with CFS, I read so much that I relate to in your whole eloquent post. I also have secondary lymphedema as a result of a surgery 2 years ago, so several days a week I have to wrap my leg in 7 bandages and several other layers of foam or over/under wraps. If I’ve not planned ahead and pre-rolled my bandages, it can take more than a half hour just to get my leg wrapped.

    Then I put on my clothes, and not only is my CFS invisible, but now the bandages that keep my leg from swelling are hidden, too. But there are a lot of spoons used up just getting dressed. Faced with the long walk into the office to my desk from the nearest available parking area, some days it takes longer to drag my leg and fatigued self to my desk than it did to drive to the office in the first place. And I arrive at my desk exhausted and aching, to be greeted by a co-worker or boss (I have 2 bosses) asking, “Feeling any better today?”

    I’ve found that “hanging in there” is about the most honest reply I can muster that is suitable for the office. But some days I’m so tempted to just tell them that I’m NOT feeling better, and that I’m not going to be feeling better no matter how often they ask.

    And how maddening is it when people who mean well find out I have CFS, and try to be helpful by saying, “Oh, well so-and-so (insert famous person or person once known to them) had that, and with therapy they eventually got better. “

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  37. Ashy

    very impressed with this post. I especially like the part about the difference between happy and healthy.

    (Not so keen on the term “little people” but as I don’t have any condition of restricted growth i am not really qualified to say if it is ok with them)

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