Friday, 26 April 2013

Am I sick enough for you?

Today I read another "but you don't look sick" comment, and it really got my goat (fainting goat of course). The comment wasn't directed at me personally. Although I've heard it enough times over the last seven years, that it raised my hackles once more and had me yelling at the computer screen in defence of the person being attacked.

I'm still perplexed as to what sick looks like. Or what the threshold is as to when you're allowed to say you're sick? And who is the final judge? Are Randy, Keith, Nicki and Mariah going to come to my house and judge my performance? Will Nicki give me a bizarre nickname? Will Randy call me "Dawg".

The fact is that not all illnesses are visible. You can't see diabetes or asthma. You can't always see cancer. A person's suffering cannot be judged by appearance or even diagnosis. Each presentation is unique to that person. As is how it impacts on their life. A twitter friend recently mentioned the hierarchy crap that goes on in cancer support groups. What the hell is wrong with these people? Though I strongly suspect that patients who devalue another patient's experience would be arseholes even if they weren't ill. Having seen similar issues in the Dysautonomia and EDS community at times, it is clear that being ill does not inoculate everyone against developing a bad case of, Being a Dick

I am told not to dwell on my illness and conversely that I need to educate people so that they may better understand my experience.

I am told to get out more and conversely that if I'm out and about I can't be that bad after all.

I am told to brush my hair and put on some lippy to feel better and conversely told that I don't look sick.

I can't win.

Should I post only sick photos on this blog or Facebook page? I could do that.

 Oooo look I'm in hospital. Unbrushed hair, sexy hospital gown, 
and slightly deranged look. I must be sick.

Would that convince you?

Or maybe a picture in of me in my wheelchair, Bernice.
FUBAR? 
OMG inappropriate sick person, be more dignified and inspirational.

Are you convinced now?

Some days my outside belies the dysfunction that is occurring within.

Ooo look I'm dressed, my hair is brushed and I have put on lippy. I must be fine. 

Should I have to carry a portfolio of sick photos on those good days to convince you?

Should I have a handy list that describes all my symptoms, medications and the way it all impacts on my, and my family's, life. Bullet points so you can assess my worthiness at a quick glance.

The reality is I have disorder that isn't always easy to spot by others.

I'm sorry if that offends your sensibilities.

I'm sorry that for the 10 minutes you spend with me I don't meet your expectations of sick.

Illness is part of my life. A big part. But I don't have to carry a placard to announce it to the world just to appease your limited thinking skills.

Does that clear up the confusion?

Stupid me for not wearing my incapacity on my sleeve.

And then I am hit with an attack from the flank.

Yes I write a blog about my health and the experience of being ill.

Yes I have a Facebook page dedicated to this blog where I can chat with the community that has sprung up and post inane jokes and take the piss about my experiences.

For some that means I concentrate too much on my illness. Again I can't win.

And yet I do have a life outside of illness.

I paint. I cook. I garden. I love scifi. I am addicted to The Walking Dead. I love music. I have a family. I am a sad dog person. I love sarcastic jokes and black humour. I enjoy a good laugh even when it ends with my passing out. I have watched Zombieland so often that I can quote large sections of the movie by heart. I love vintage fashion. I love re-purposing furniture. I am team Dean. I love hanging out with my best friend, singing 80's ballads and solving the world's problems. I love the smell of books, the real deal, none of that Kindle crap. I want a farm and a chook house. I eat brown sugar out of the jar and have been known to pick out and eat all the the white marshmallows in the bag.

One train of thought tells me if I do all that, I can't really be sick.

One train of thought tells me if I don't embrace all that, I am dwelling in my illness.

Damned if you, and damned if you don't.

NEWSFLASH

I don't care if you think I am sick enough.

I don't care if you think I dwell on my illness too much.

You don't know me or my experience.

You have a glimpse into my life nothing more.

There is no face of illness. There is no look you can pick out in a crowd.

The pictures above represent aspects of my illness and life. But are hardly representative of me as a whole.

The underlying disorder is still there, it's just that sometimes the packaging changes.

It's not my fault that you can't understand that.

And it's not my job to educate you.

That you can't understand says more about your lack of imagination than it does my life.

That you need to judge me says far more about your lack of compassion than it does me.

Imagine what you could achieve if you re-directed all that energy into simply being a decent human being? Or perhaps, shockingly, focusing on your own life.

You may not be able to spot my illness, but I can spot your lack of character at 100 paces.

You may not like how I live my life and deal with my illness. But. Well. Frankly, I couldn't care less.

Now excuse me whilst I go and continue living my life.

There are wheelchairs to be bedazzled, and Daryls to be sighed at.

Michelle

75 comments:

  1. Replies
    1. Loved your article. I have Fibromyalgia and COPD. With the COPD it is very obvious that I am sick. That canister hanging on my shoulder with the tubes sticking into my nostrils is the only clue! So people know that something is wrong with me. Thus, I get looks of pity or looks that seem to be looks of disgust. I am thin, 63, not bad looking for an aging widow and would love to meet a guy who would like me in spite of the "baggage" that comes with me. But people just walk by and try to pretend they don't see you. So I understand a bit of what you are going through. I just chalk it up to ignorance and continue on my way. I am blessed and life is good, no matter what tomorrow brings. God Bless you too.

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    2. Thanks Susan. :) I have noticed the disgust or pity looks when I am in my wheelchair. My son became really angry on my behalf the first time he was pushing me when we were out and about and started scowling back. It was a real eye opener for him to see how people react. As you say some simply ignore you. Others seem to take offence at our presence. Thankfully there are some lovely people to balance it all out. :)

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    3. Michelle,
      I have a friend that just told me that she doesn't think I have Fibromyalgia, even after I have had 3 expert specialists and doctors tell me I must accept the fact that I do. I've cried and begged God to make this diagnosis not to be true. But of course it is. I guess like you I just don't look sick enough. I try to each day have as good of a day as possible, because I know there are many days that I will not even be able to leave my house, many days I have not been able to leave my bed or sofa. But like you I guess I just don't take pictures or video's and broadcast over my emails of my pain or put into FaceBook. I am so proud that you are able to show to us your courage, your determination, your love of friends and family and life. I like you, choose to live. and to fight the never ending pain. To have Sunshine on my face and a smile of a day when I can feel great about celebrating Life and why I am here. Blessings to you Michelle and to all of us that are choosing to live instead of giving up to those that don't believe us..We will not just let this disease take all of our happiness with it ! I have Fibro but it doesn't have me !
      xoxo
      Dollie

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    4. I'm so sorry your friend has acted so poorly. Your story is all our stories, Dollie. The one thing I am finding reading all the comments on here and on FB is that this issue is widespread and that we are all united by a similar journey irrespective of the illness/disorder/disability involved. Despite many of the stories that break my heart, there is an amazing amount of strength out there too. Like you said, "Sunshine on my face and a smile of a day when I can feel great about celebrating Life and why I am here". Being able to do that despite everything is evidence of amazing strength. I wish I could send a huge group hug out into the ether to everyone dealing with this issue. xx

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    5. Loved the article.

      In reference to the bit about the wheelchair. I'm not much of a face reader and so don't really focus on the faces of others and therefore haven't noticed the looks. Besides, when at my sickest and in need of the chair, I don't think I'd notice even if I normally noticed others' faces. However, my ex, when she left me, said, "I know this doesn't sound very nice, but I don't like the attention called to me when we are out with you in your wheelchair and dark glasses (for light sensitivity). I already get enough negative attention as a dyke without the attention the chair brings." Lovely.

      However, I too try to have fun with what I have. I used to always say that if I had a walker, it would be bedazzled and have a bike bell and mirror with streamers. Of course, by the time I had a rollator, I was too sick to bedazzle it. Still, I did what I could, like wearing shocking pink leather gloves with the black leather jacket, dark glasses, and hat I had to wear (that I had to wear during the worst of my light sensitivity) while in my wheelchair. One day, as I was in a store, tooling about in an electric cart, a woman walking briskly by laughed, stopped, and said, "I love the gloves!" Now there was a person I could appreciate!

      I needed your article today. I've generally been patient and calm with others, but know for sanity's sake I need to let people eat my dust. I'm just so done with ignorance.

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    6. Was glad I stumbled onto your blog this evening. I was licking my wounds after hearing the words, "it's been my observation that you are too protective of your son and that he needs the freedom to be away from you in his Sunday school class." My ten year old has dysautonomia. I want to scream, "really, you really think you know my son better than I do and are you JUDGING me?" :( I NEEDED someone to get it. Sadly, that someone is you.

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  2. I'm sorry you needed to post this. People certainly don't have a right to judge you or your illness and you should feel free to share whatever you like on your own blog. Wishing you well. Rachel xx

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    1. Thanks Rachel. I really appreciate your support. Unfortunately as you can probably tell from the other comments on here it is a really common occurrence for those of us with chronic illness. Usually I don't let it get to me but some days it just gets a bit much. :)

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  3. Hear Hear!....

    I am in total agreement with you there! I get the same - I have horses, and while, sure, there are days I can get out there and trim feet (which takes me forever, sitting on a milk crate under the horse with his or her hoof in my lap, and considerable pain involved while trying to do it....) - they are few and far between! And folk dont 'see' that it then takes me a week to get over it enough to think it wasnt 'that bad' and that I could do it again! (Yes, I am an idiot! lol)....

    Then there are the days like today - I try to sit up and am dizzy and feel like I am about to vomit and pass out... POTS is the PITS!

    Gentle (very gentle) hugs! Shell xxx

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    1. Yes! And why wouldn't you get and be with the horses you love when you can? I begrudge feeling like I have to explain just how hard it is to go out or play with my dogs etc. We all want to make the most of those 'good' times, that doesn't mean that we aren't still really unwell. Ugh. Hugs to you to Shell xx

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  4. Maybe we all need our diseases tattooed on our foreheads?

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    1. And then we'd be told off for living our illness. I honestly don't think there is a win option in the eyes of some others. it's why I tend to just do my own thing and think stuff everyone else xx

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    2. I often think this as I step out of my car in the handicapped parking...lol

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  5. brilliant piece michelle. I have come round to this fact, its all down to them, their perceptions, I don't need to use my time to try to convince otherwise.

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    1. So true Em. When we have limited energy this is one area we don't need to be spending it on. xx

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  6. If we tattooed our illness on our forhead we would be dwelling ..lol I only try to explain my self to people who want to use me up but then when it don't get threw to them I relies they ate just users and walk away .

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    1. I agree Anon. Some people just don't want to know, so they are not worth your time. xx

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  7. Walk the bridge of sighs with your head held high.And you do.. You make me proud my darling girl..

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  8. I think I look sick. If you look at my facebook photos (all of which are at least two years old) you will see a well-put-together woman with pretty hair and perfect makeup and a clear complexion. I was also about 50 pounds slimmer. Now, I have rosacea, I can't stand long enough to do my makeup. I have cut my hair very short because I don't have the strength to style it each morning. I've gained weight and I always look tired. However, these have been gradual changes, so people haven't "noticed" them as much as I have. The funny thing is, I can look "fine" one moment, but a few minutes later I crash and suddenly everyone is commenting on how I look tired or like I don't feel very well. People that see me in the store using the electric scooter are surprised, as they have seen me walking to my car and back with seemingly no apparent disability. I just tell them I have blood pressure issues. Most people don't want to hear it or understand it anyway. Sorry to write a book. You hit upon a nerve with your wonderfully honest post. Thank you for taking the time to put it into words.

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    1. Write away Unknown sometimes we just need to get it all out :) (hugs)

      This post really has hit a nerve on here and on FB. I knew it was an issue that many of us had encountered at one time or another but it saddens me how rampant these attitudes seem to be no matter where we live.

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  9. You make me cheer, cry, smile and feel understood. I <3 u for that. I hope you feel the <3 from all of us in cyberzombieland :-)

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    1. Thanks Stacy :) And yes I am really feeling the love from cyberzombieland xx

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  10. we should have like a traffic light on us that flashes a color light according to how we feel that day.
    Green= having a good day. yellow= so, so red= just let me lay down all day. I hate when people just don't get it !! Even your own family !:(

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    1. Oooo I like your idea Anon. Way better than my slap them upside the head idea xx

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    2. Kinda like a mood ring ...

      ... or one of those t shirst that change colour with heat ;)

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  11. Awesomeness in print, yet again!! I could swear you live in my mind and you so eloquently put into words what I go through on a daily basis, well, minus the IV treatment. I love to read your words. You make me laugh (and cry sometimes) but through it all you are a blessed encouragement to me that I am certainly not alone. I think you are a beautiful soul, with or without lippy :) Please write a book already!

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    1. Thank you so much Never Hopeless xx PS maybe I do live in your head Muahahahahaha! ;)

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  12. You so totally ROCK! You say what I really want to say - and then if I do say it - I ge all sorts of crap for it from other bloggers.
    I was told by MY HUSBAND the other day that I "could do something about how sick I am" if I really wanted to!! REALLY?!?!!? How?
    Do you know the directions to DiagonAlly so I can head over to the wand shop and procure my own magic wand? That way, I could cast some spell upon myself to grow my hair back, get rid of my chest pain, give myself the ability to sleep, and change my DNA so it doesn't produce all the nastiness against my own body that it does now.
    The "looking sick" issue is a huge one. I got harassed by a state cop because I didn't
    look like" I deserved a handicapped parking placquard (which I have since given up b/c I'd rather try to get as much movement into my life as possible - plus, I am rarely abe to drive now.)

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    1. I'm so sorry you've dealt with that from other bloggers, your husband and a police officer! Just goes to show the judgement can come from anywhere :( Sad that so many of us can relate, though I sometimes think we can share each others strength but sharing our experiences. And we are damn strong with all we deal with each day xx

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  13. I am strongly considering looking like a throw back hottie and holding an 'I'm Sick' sign. I mean it really is in everyones best interest.
    If Nicki is involved in my judging I'd like to request her to do a half British half American sentence declaring something like I am the lovechild of a zombie and candy. I like her when she is vocally geographically challenged and nonsensical <3
    Carrie over at Just Mildly Medicated

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    1. You could rock it Carrie (I want photos!!!) Nicki is the right kind of crazy isn't she. Far more entertaining than the others xx

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  14. Rock on ... the insensitive priggs that say shit like that have never experienced pain that Tylenol wont take away, fatigue that coffee wont fix, or a body that betrays you constantly.

    I have a 17 yr old who has lost all her so called friends because they felt she was faking.. was told to see a shrink by the Doctors caring for her because they could not find what was wrong, and a society that does not see you as sick if you are not bleeding or having chemo.

    Stay strong , be beautiful( even with no lippy and a hospital gown) cause you are amazing .. TY for sharing.. especially since we(my daughter and I ) have been hard pressed to find info that helped her deal with her Dysautonomia... Blessing from a distraught Mom

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    1. It makes me so sad and so angry when I hear how patients especially kids lose their friends because of illness. It makes me worry for society as a whole that we have become so individualistic and seem to be losing the trait of compassion. I'm glad your daughter has you in her corner. xx

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  15. You do have a tendency to sum up the collective experience of those of us who are ill in a socially "unacceptable" way.
    I once collapsed in the street and as I regained consciousness found a policeman stood over me telling concerned passers by "Don't worry, leave her, she'll just be a junkie or drunk". As I lay there on the cold wet concrete, too weak to even lift my head or speak I wondered what difference would it actually have made? Would YOU see "just a junkie" or would you see a young woman, vulnerable and unwell collapsed on the floor?
    I have had bus drivers question my entitlement to a disabled bus pass, stating that I don't look ill to them. Implying what? That I am a fraudster?
    I have heard people say its all in my head (doctors included). Well if I was so ill with a mental health issue would I not deserve the same support given to those with physical health issues?
    People just can't seem to understand that the days they see me are the good days, the days when I am actually able to leave the house and get out and about. The bad days I can't even leave my bed, so no, you won't see me as I don't invite people into my bedroom like I am some circus sideshow.
    I don't know about elsewhere but in the UK the current government rhetoric about "scroungers", "shirkers", "fraudulent disability claims" have led to a disturbing rise in disability related hate crime. I feel afraid.
    Sorry for the essay! Keep up the good work. x

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    1. That is appalling Anon. I can't believe a police officer would treat you so cavalierly. Every time I think I can't be horrified by a story another one pops up. When someone who is supposed to protect and serve acts like that what hope do we have. I'm so sorry you went through that.

      What's happening in the UK is just disgraceful. We have that somewhat over here, but you guys seem to have a full campaign against the disabled and ill. I just don't get it. I still say a society should be defined by how they treat their most vulnerable and a lot seem to be coming up short. Hugs for Oz.

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  16. Wonderful blog post, because you are so right. I know exactly what you are talking about: and, I finally decided I could not worry about what other people think. I even get confused about myself sometimes, until I have a horrible relapse. I'm tired of being sick. There are other things I would like to do that I cannot do anymore.

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    1. Not worrying about what others think is a gift we can give ourselves. But it is hard some days. xx

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  17. Love love love and will be sharing.

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  18. Wonderful post. I have ME. I am no longer well enough to blog but have gained a lot by reading other people's work, especially yours today! You are so generous in your response to comments. I hope you don't crash because of the support you are giving out. I relate to all that you have written. It made me very sad but also helps me to know it is the same for others. I love Game of Thrones, Dexter, The Misfits. I must check out your favourites as I love black humour, too. Lots of love from Katherine

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    1. Thanks Katherine xx I love GoT too and Dexter, Misfits I've only watched a few but may have to watch more ;) Must admit I am a bit tired from replying but figure (not used to such a response) if people are lovely enough to comment it's the least I can do to reply. I am thinking about maybe taking a social media holiday tomorrow though to make sure I don't end up collapsing :)

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  19. Interesting article. I am a carer of a person with a recognisable disability, and even then I get flack from using disabled parking, stares and side-whispers from all age groups. I have friends whose children have non-recognisable disabilities who get judgemental comments. It is never nice. Just keep your chin up, hold your head high (when you can) and be the best person you can be. God bless.

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    1. Thanks Anon. It's a sad indictment on society that you would be getting comments and looks when the person you're with has a recognisable disability. Basic manners often seem to go out the window with compassion.

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  20. Hear Hear
    I have a daughter with Fibro & Mixed Connective Tissue Disease, I see her pain because she lets me because I am her mother and if she cant break down with me then she has no other outlet.
    When we go out she pops on some makeup and a lovely outfit, she dresses her baby up and she really tries to smile and laugh and be normal, Then people see her trying to get up out of her chair (which is very painful for her to do) and she feels like she is being judged, she feels people must be saying how lazy she is etc (she is a bigger girl as due to all the medication she is now on she cant lose her baby weight), When she cant open a bottle of water, or pull her babies pants up due to the pain and inflamation in her hands, which people cant see she just gets so upset and depressed that people watch and judge her.
    It is heartbreaking for me to watch and all I can do is support her.
    People need to stop and think that maybe there are other reasons why someone they see is struggling, they are not just lazy...Maybe one day xx

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    1. I'm so sorry your daughter is struggling so much and is also dealing with these issues. It's hard for others to understand just what it takes to get out and about some days, or that all most of us want to enjoy life as much as we can and will push to do that even if we pay later. I'm glad your daughter has you in her corner. xx

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  21. thank you so much xx i am a fibro fighter, i`ve had this for nearly 30 years and it took me 14 of those to find a doctor who believed me, so it`s not just everyday people who are ignorant. the medical profession are worse because they are suppose to know about the illnesses we suffer. i don`t know about anyone else but i have never had any follow up appointments with a specialist to see how i`m going or even a support worker to help with the changing problems, i`ve just been left to deal with it on my own. people like yourself are a god send to us all because you have opened our worlds up to others who can offer support and comfort xx thank you xxxx

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    1. Sadly you are right Anon. There are some great docs if you can find them but there are many who just don't get it. There is such a huge difference between the clinical observation and what it means in real life. So many of us, including myself, have been dismissed or told it's all in our heads etc It makes me both sad and angry that so many of us have the same negative experiences. I'm so sorry that you've had no follow up that is appalling. (hugs)

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  22. You have definitely nailed it! I have fibromyalgia, and I, too ride the electric scooters at the stores, when I can. I may be able to walk in just fine, but that doesn't mean that, by the time my shopping is done, I will be able to walk out the same way. Being only 30 I find it embarrassing. I ride past people looking down on me like I'm just some lazy slob taking the "easy way out" just because I still force a smile on my face. But they never look me in the eyes to see the exhaustion and the pain. If they did, I guarantee they may not whisper among each other, or roll their eyes. They only WANT to doubt and not to accept that, if life had dealt them differently, it could have been them. After reading your post I vow to no longer look away from those who might be judging me, but to look them in the eyes. Make them face me, as I am forced to face my illness every day. My body may be weak, but my heart is strong!

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    1. YES. I can sometimes walk in relatively okay but 5 mins in I'm stumbling and slurring and often walk out looking drunk more than sick. My son took me to see a comedy show a couple of weeks ago. I looked fine despite being in a wheelchair and being wheeled by my son, no way I could have walked around the city at night. The looks, ugh. You either don't exist or you get the whispers and the looks of disgust. Can't win. As you say all you can do is hold your head high and look them in the eye. xx

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  23. Brilliant post babe. It's forever frustrating when people tell me I sound good on the phone followed by you must be feeling better just because I'm having a day where my speech isn't affected. Unless by some miracle they find a cure for Parkinson's I'm not going to get better, at best I will get a break from symptoms now and then, but it's always waiting for me.

    It wears you down have to constantly justify your illness. I dream one day I will live in an empathetic world. I can't help but be jealous of all those people who never get sick. Keep up the good fight!

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    1. Thanks babe. What is with that "you sound fine on the phone" business? I don't get it. How does that equal cure. Argh. I hope for that empathetic world too. It has to happen one day I'm sure xx

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  24. Love this! OMG I am so glad I am not the only one who eats brown sugar out of the jar! Hahaha, and girl I make my own with organic sugar, and this local sorghum molasses. OMG. I think I will go have a some now. Love ya lady.

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    1. Babe I so wish we were closer so we could hang out and eat brown sugar and tell fart jokes. Oh the times we'd have xx

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  25. I love this post! You've wrote down how everyone with invisible illnesses feel! I try not to talk about my illnesses, I'm sure you know how complex autonomic dysfunctions and EDS can be,there's too much to explain. If people want to doubt my condition than they're not worth knowing.i refuse to let illnesses stop me from living so if I want to go out and socialise I will, they don't see the 32 tablets a day I take just so I can try to live an normal life. I will post pictures of me with make up on, hair done, and dressed up. If people are ignorant enough not to see past that then I don't need them in my life. I love my life at the moment, I don't care how sick I am.i have great friends and family and as long as I have their support that's all I need.

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    1. Go Stacey. You are right those who doubt our conditions are not worth knowing. I must admit for the most part I have filtered out the people in my life who bring me down. Life is too short to waste on people who don't add to your life or bring you down. Plus those times you can get out and have fun are like gold. Buggered if we should let others wreck that! xx

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  26. I refuse to be invisible! Like Miss Celie in the color purple..."I may be poor, I may be ignorant, hell i may even be ugly!!!But I am here by God I AM HERE!!!!
    im going through bit of an angry spell because i m having a wedding in 18 days it has taken me 2 yers to pull it together and still not done, becuase as we all know not only do these damn diseases take our prvious life, they take a serious chunk out of the pocket book tto! It was actually said to me funny, younever have energy for me, but you have the energy to plan and have a big wedding!" ARE YOU FREAKING KIDDING ME? I am having nightmares aout aking up on my wedding day with flare upso bad i ant lave my bed and you are giving me crap over trying to be happy? so i dont h much patience with the but you dont look sick people..my god if i dont look ad enuff for you you must live in TV world anyone with eyes cn see i look like crap..oh i forgot, that just means im too lazy to brush hair and apply make up and get dressed! I love this sight and am forwrding to Fibro Warriors many of us suffer from Bob as well!

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  27. Wow....I think you look plenty sick. But, I say this in a good way. We can sometimes go incognito into the world of the healthy. I have often thought a tatoo on my forhead might do the trick...you know with bangs, that I can lift up....you know for the overly educated public. I often thought of tatoos right on my chest, so they will send me to the right hospital. UGH, I listened to that garbage for 31 yrs as a Welfare case manager..even when I was taken a second to put a nitro in my mouth, so as to get through my shift & help the most needy people...food & shelter are important whether you are sick or not. My clients were my cheerleaders, as I was 20 yrs into my career before I could not get out of my bed every day to get to my work. I most always made it up to my clients.They always forgave me my weakness regarding my body. Good souls will always know your truths. Your awesome my friend!!!

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  28. I am glad you posted this. I get looks for my handicap tag and just last week I got chastised because I couldnt put the cart back. The guy snapped at me and told me I was lazy. I told him I have chronic pain disorder. Like I had to tell him anything. For some reason I felt I had to.

    A priest when I was admitted to the hospital looked into my room says you don't look sick you shouldn't be there. Should have yelled, should have told him off..should of I have respect though no matter what the religion. But I deeply fought the tears...well until he was gone.

    My invisible illness...

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  29. I am glad you posted this. I get looks for my handicap tag and just last week I got chastised because I couldnt put the cart back. The guy snapped at me and told me I was lazy. I told him I have chronic pain disorder. Like I had to tell him anything. For some reason I felt I had to.

    A priest when I was admitted to the hospital looked into my room says you don't look sick you shouldn't be there. Should have yelled, should have told him off..should of I have respect though no matter what the religion. But I deeply fought the tears...well until he was gone.

    My invisible illness...

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  30. I feel like I could've written this post because it described so much of my experience of being sick (including The Walking Dead addiction and a slight crush on Dean). Thanks for a fantastic article.

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  31. Your my hero Michelle. I'm sick too, but was able to fool myself & the world & my employer for years. Finally, I suffered the consequences...I watched my twin sister be so mistreated & misunderstood...I wish she was still alive..I want to give her another hug & tell her how loved she is. I still have a fire in me that no one can put out, including this illness. We will stand strong together.

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  32. Thank You!
    Written perfectly with a sense of humor!
    I never thought I would say this, but it's nice to know my feelings are validated and I am not alone in experiencing the same doubts. (NOT that I want others to deal with the doubts.)
    Thanks for the validation and above all...The humor!
    XO
    Maria

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  33. Hi. I have read This post before. But needed to read it again. Yesterday day i was at a demdoc for skin problem( nothing to do about my pots at all). She Asked about me using the wheelchair etc. That ok, but its the way its done. And Then, the all winning, u look so healthy! I have now √łearned to smile and say well tank u.

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  34. Here, here!! Thankfully I have a friendship community that is really good, understanding and supportive, but when I am getting to know new people or in a new study, work or social environment it can be really challenging. I live with a list of invisible illness/disability/whatever. It's part of my daily life, impacting more on some days than on others. But it's always there. Mostly I don't bother trying to justify my lifestyle (arranged around my limitations and capabilities, likes and interests) that doesn't fit the conventional work picture for someone of my age or education... but some times it's hard to remember that I don't have to justify or explain it. Thank-you for your rant - it adds to the list of things that help me keep the courage going to say "I am who I am and I do what I do, and if you don't like it then you don't have to be a part of it"... X

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  35. Just…reading through many of your posts and I'm kind of crying on this one. You really DO feel like you can't win, seriously.

    Went through a lot of this over the last couple years just before I got diagnosed. If I didn't feel well enough to go out, I was being anti-social or moody. If I gave in and went out but felt awful the whole time, then I was just stubbornly refusing to have a good time. Being honest about how I felt was being whiny and seeking attention, and down-playing how bad I felt meant that I wasn't REALLY sick enough to need any help.

    You can't be strong nor weak nor have good days nor bad ones. There seems to be this mold of the 'perfect sick person' that society expects to see and is willing to help, and everything else is unacceptable.

    Thanks for this post - reminding me to stand up for myself and to judge myself by my standards and not those around me. It helps a lot today.

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  36. Have read through all these comments and am contemplating printing the whole lot and sticking them together- one in a book for all the ignoramouses in this world and one as a coat so those ignoramouseses can have a quick read of me when they are making their assumptions. I am alway baffled by what sick is supposesd to look like, peeves me when consultants put on my letters that I look well and then follows the spew of problems, the only thing that others then read is that I look well therefore must be well. I visit hospital many a day, the only folk who dont 'look well' are those who pass by tethered to a bed by a million tubes in every orofice. The other people there must be sick or they wouldnt be there would they...........mind boggling. People should try living with POTS, EDS, Fibro and all the other crappy things for just one day and then see how they feel. Great post, helps to confirm that I am not mad and I am not the only one who suffers this discrimination cos that is what it is.

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  37. Bloody right to the point and I love it, I have RA, OA and fibromyalgia as well as a vascular issue that at 46 caused me to have a colonic stroke, which has left me with severe bowel probs. and numerous other medical issues. Yes I look ok on the outside, till you see the slight limpy gait, the pained look on my face 5-6 out of 7 days. I have a family and grandchildren, a mortgage to pay, a car to pay off and am still working. Even though I struggle everyday to work. I'm lucky ATM I can still do it, abet not to my full capacity, maybe not even half way lol. But I'm lucky to have a fairly cruisy job and I love what I do, it's my passion. I know at some stage probably in the very near future that will be changing and I'm actually looking forward to being able to be at home again and craft and read and do the things I'm missing out on as work drains all my energy, so when at home I'm normally flat on the lounge asleep or unable to move.
    I love your blog and Facebook page, gives me inspiration. I love your black humour and the way you can just take the piss. Keep it up Michelle. Between you and my sis who has just survived her second bout of breast cancer, you are my inspiration to get up and just bloody carry on.
    Thumbs up chook and one day I hope you get that farm and chook house. ( we need the tree change 7 years ago, never regretted it)
    Shazzy xxx

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx