I know, intimately, how these illnesses affect my life every day. I live it every moment of every day. I suffer from its devastating effects every time it whimsically determines that today is the day it will knock me to my knees. I endure its relentless attacks over and over and have done so for over 20 years.
I grow frustrated some days as to how people without either of these illnesses struggle for the smallest nugget of understanding. I understand they have no frame of reference to do so, yet, I still find it difficult that they can’t grasp what is wrong with me.
Invisible is right.
I saw a young man today when I was walking Dekker. He must have been in a serious accident that included fire because his face was badly scarred and he was missing his right hand. When I walked pasted him, I looked him right in his eyes because I wanted him to know, I wasn’t bothered by or afraid of his injury. As I passed him, however, I found myself thinking how nice it would be for people to walk past me and be able to “see” this thing called CFIDS or FMS.
Shortly afterwards I changed my mind. I knew that he probably encountered much discrimination and difficulties as the result of his injury. Even still, I also realized, when he walked passed me and looked at me, he had no idea at all that I was ill. None. I knew he couldn’t ‘see’ it.
Invisible is right.
Then I got to thinking about my first response of wishing people could ‘see’ my illness. Would that really make a difference? Would ‘seeing’ the illnesses attach believability or credibility to it? Would ‘seeing’ this illness change the perspective of those in the psychiatric world who still believe it is all in my head? I don’t know. All I do know is that having an illness that cannot be ‘seen’ somehow reflects poorly on me, through no doing of my own.
I repeatedly find myself approached by a modicum of suspicion by those who know nothing of who I am. Me being the bigger person, want’s to let it slide off my back, but how long must I do this? Twenty years of living with these illnesses and I still am fighting the impression that I am exaggerating or lazy. All because my illnesses cannot be ‘seen’?
Seeing has become synonymous with credibility. When did that happen? And why has someone determined that seeing is an appropriate marker for deciding whether or not I am really ill .
Invisible is right.
Many with these illness are housebound. Some are even bed bound. The severity of their illness has made them even more invisible. Does that mean they are less credible – or more? How silly that seems to me. 17 MILLION and counting are now ill with these illnesses. Are they all to be approached with wary suspicion just because their illness cannot be seen? Again, who determined that?
Invisible is right.
Besides the lack of credibility that what I say is true, living with an invisible illness is akin to living in the shadows. I’m there, but my presence into the world has become less, thus, the world goes on without me, forgetting that I am struggling with all my might to find a way to a cure so I can rejoin them. More often than not, relationships dwindle to a sparse memory.
I have become troubled with this aspect of my illnesses. So many that I meet, are losing their connection with the world. They are struggling to find what their purpose is in the midst of this challenging scenario. I’m no different. How many times have I asked God what is it that I am supposed to do. I know I have a purpose, but often times it is hard to ‘see’ or find.
Invisible is right.
I have decided that I no longer want to accept the world’s interpretation of my illnesses. While it may be one that cannot be seen with the naked eye, it is as real as if I had cancer or AIDS. Despite the fact that these illness continue to hide and allude those within the medical and scientific world makes no difference to me.
That is why I have been searching and praying for a way to help bring CFIDS, ME, and FMS out of the shadows and into the light. The illnesses themselves may not be able to be seen by human eyes, but the stories that go with them, most surely can.
Invisible Awareness is just that. It is the vehicle that will bring people and their stories out into the main arena of life in a way that the average bystander can no longer ignore and dispute. One story may easily be cast to the side as lacking credibility, but 17 MILLION and counting? I think not. There is much power when people come together in unity for one purpose.
Invisible Awareness is that purpose. Perhaps after ‘seeing’ MILLIONS of personal stories, the world around us might actually develop an ability to see the truth that has always been right before them.
Our illness is invisible, but we are not.
Determined to continue forward,
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Dominique,
I have no experience with your illnesses. I’ve learned more from your blog than I ever knew before (which shows that your awareness campaign is a good idea).
However, I do have experience with family members with Alzheimer’s. It’s not invisible in the same way as your diseases, but it’s not something that people can easily recognize, like the burned faces.
People often treat Alzheimer’s patients very badly because they don’t understand the person has a disease. Because of the symptomatic behavior, people think the patient is simply being difficult or obnoxious. Sometimes the symptoms include combativeness and aggression as well as confusion and memory loss, especially in the early stages when the patient recognizes something is wrong but doesn’t know what and is terrified and helpless to do anything about it. The patient is thought to be just mean or nasty.
It breaks my heart to see strangers respond nastily to my loved ones because the strangers have no idea that they are dealing with a person with an illness. The patient becomes isolated both because of the inability to function and because of the treatment from others.
Best wishes in your Invisible Awareness campaign.
Lillie Ammann´s last [type] ..4 Years and 800 Posts!
Lillie – My mom thinks my dad may be starting Alzheimer’s so I understand how the symptoms are often ‘misunderstood’ or not ‘tolerated’ well. My dad will have these episodes where he goes complete void – not blank – nothingness. I’ve never seen anything like it. It breaks my heart when he does it. My mom really struggles with it sometimes, but having my own memory problems I know it isn’t his fault.
You make a great point. The person struggling with the ‘invisible’ illness becomes isolated not only from an inability to function but BECAUSE OF HOW THEY ARE TREATED! Wow!
BTW, I’m stealing your title! I like it better. Invisible Awareness Campaign. Love that! (You don’t mind do you!?0
LOVED this, Dominique! And guess what? I retweeted it!! Woo Hoo!
Love your last line “Our illness is invisible, but we are not.”
Laurel´s last [type] ..Determined Spirits
Laurel – I LOVE YOU! YOU ROCK! LOL! You are amazing, Laurel! Absolutely Amazing.
I absolutely love this too!! It is due time we get to come out of the shadows!!
Annie´s last [type] ..Pushing My Limits…For Fun, No Less
Annie –
I raise awareness at every opportunity. Like you, I grow weary of the “what’s that” look on peoples faces so when I see it I carpe diem. My daughter coordinated a fundraiser in January to raise awareness about this illness and I would have given anything to be able to attend. It was a great success and it raised awareness just a little more (at least in Dallas, TX).
Kudos to you Dominique for your campaign to increase awareness. I too am getting tired of the “what’s wrong with you” question. Even my own CFS doctor asked me recently why I have to lay down during my visits with him. LOL
Michelle – Ouch! Your own doctor asked you that! Uhm … maybe it’s time for a, uh … new …doctor? I am always gob smacked when I hear stories like this. My word!
Thank you for doing so much to help people understand! Kudos to you!
My doc is not so good but he is the only one trained in the area where I live to administer the Cheney Protocol. I am currently on that protocol and that is the only reason I see him.
Michelle – You’re doing the CHENEY PROTOCOL! Oh! I’m so excited for you. I adore Dr. Cheney! HE would never talk to you like that. I agree, you need to stick to it. Do you ever get to actually see Dr. Cheney?
I don’t get to talk to Cheney but I have the next best thing. One of his patients (very sick for almost 30 years) lives near me and is doing so well that she is considering going back to work. We email regularly and she keeps me updated on the latest developments.
His latest recommendation is to drink an alkaline water (8.88 pH)called Iceland Springs.
http://www.icelandspring.com/
Walgreens carries it and I special order 2 cases a week.
Michelle – She’s thinking of going back to work after 30 years! That is amazing! Thanks for that. I will check that out.
I’m also tired after 23 years of
being invisible. Only time I don’t
feel invisible is if I make it out
to a store and use the ride on cart.
Amazing how considerate and helpful
people are when they can “see” Also
now that I’m older and grayer I more
look the part on the scooter. In
younger years someone chided me for
using a Disabled Parking Permit – wagging their finger at me and moving
their head back and forth for “No you aren’t.” To be visibile we need the stories connected with the illness
labels that is for sure; so when we
say I have such and such..stories will
come to mind and make us visible and validated.
I’ve often thought when someone says to me “you are looking good/or you
are looking peppy-ier” I think to
myself well it is good I don’t look as
bad as I feel. LOL I looked for your
twitter button and could not find it
But I guess you need to get me a twitter account first? Wondering
why I had to re-enter name, addy-
before it was always already there.
Hope this goes thru. Kinda embarrassed
that I’ve left so many messages! It is part of my day to come here and read
and respond. Because I like this blog so much it saves energy
not to go to a lot of other blogs very often.
Patricia – I had someone – true story – once leave a note on my car (at the post office) telling me the reason I had a disability tag was because I was a fat, lazy pig! Another time, some yelled out their truck and told me to get my fat, lazy butt in gear so I wouldn’t need to have a disability tag. I cried like a baby. So I totally get it. In their defense, I think we wouldn’t run into that so much if people who are not disabled would NOT use the parking space or would get HUGE tickets when they do so. What happens next is we are assumed to be one of those morons!
I’m not sure what you mean by my twitter button. The one you click to send the article? It is the green button at the end of the article that says tweet. It’s down to the right of my signature.
Yeah, I’m not real comfortable with looking better or peppier either. It never accurately describes us on the inside does it?
I’m so glad you find this blog helpful. That does my soul good!!
On your name thing, it might be because I have upgrade to this beautiful peach theme! LOL! Sometimes it takes a time or two for the new looks to work out all their kinks. Let me know if that continues to be a problem for you.
Hi Dominique.
I’m a first time visitor to your blog and have to say have full admiration for your determination to raise awareness. I have M.E. and know that many people struggle to ‘see’ what is wrong with me. At the end of the day, they only see me when I am feeling okay and often they cannot make the leap in there minds between lively, made up, bubbly Karen and ‘Sofa Karen’. I feel like I have spent years chipping away at friends perceptions of this illness. My Dad said to me ‘is it a good thing or a bad thing that you don’t look ill?’ I said it depends. ‘On good days I like that I can blend in. On bad days it’s frustrating as hel!’
I’ve subscribed to your blog so you will be seeing me again!!
xx
Sofa Karen´s last [type] ..Mid life ‘wobble’
Hi Sofa Karen – Boy that sounds familiar – the sofa I mean! LOL! I love that! “On good days I like that I can blend in. On bad days it’s frustrating as hell!”
I look forward to seeing you hanging around here. There is quite a few of us now. We seem to be growing exponentially! Hmmm. Not sure why, but I’m glad people are enjoying it!
Again, thanks for coming by!
Hi Dominique
This post is great….hats off to your Invisible Illness campaign…Sounds like it is going to go very well with you and Judy teaming up to make it happen….
I already have a Twitter account, but not so sure what to do with it. Went there twice, and decided Facebook was more my style….Guess I will need you to tell me how to do what I need to when the time comes….
Until later…
Renee´s last [type] ..Saturday’s Scribbles
Renee – You have anything you need from me, my friend. Just let me know how I can help. I’m now off to take a very needed rest. Lymph nodes are swelling really bad today and my voice is almost gone! So glad you appointment went so well. God is so good! HA!
This is a great post! I totally identify, I often wish I actually I looked ill. I hate looking fine & then not being able to live up to people’s expectations of what I can do. I hate having to try & explain my illness. And I hate that even my friends have no idea of how sick I actually am because when I do get to see them I look absolutely fine. Maybe I’m not wearing high heels & make up like the old days but I don’t actually look sick. I often wonder that if I had a visible sign of my illness or disability would people treat me differently, would they be more understanding & accepting? And I kind of think they would. I’ve often even thought carrying a stick on the occasions I get to go out (even though it wouldn’t really help me in any way) would be a sign of my illness without me having to explain to everyone…then again maybe it would just lead to more questions!
missmilki – I’m glad you were able to relate. It does make having an real, viable illness that much harder, huh! I’ve often postulated that the lack of visibility is the reason we are not taken seriously be half of the medical/scientific world.
Thanks for dropping in and sharing your thought.
I only just discovered your blog! I guess I’m lucky, in a sad kind of way, that my Mum has arthritis and has had a total knee replacement. (But apparently Mum isn’t eligible for any sort of disability tag!) She limps, and does look like she is in pain, so when I’m with her, I’m never hassled about being a liar, or a cheat, etc. I’m not going to repeat the obscenities I used to get; I got the disabled tag for the family car when I was 14, it expires this September, so I’ll need to apply for another. =|
I think the problem is that it’s invisible. Even when I was hospitalised at age 9 for a cancer scare, which turned out to be a cluster of symptoms, they didn’t think I was in pain, because what sort of 9 year old wants to be stuck in a hospital bed, with IV’s in them, when they could play Nintendo with the girl in the next bed?! In the end I got morphine for it, when they’d tried everything else.
Now that I have an official diagnosis of M.E., my pain is ignored. It leaves me incapacitated, I can collapse if I get severe back spasms, but no doctor will give me anything strong enough. Apparently the treatment for Fibromyalgia in Australia is anti-depressants; the same as M.E. Lack of sleep causes and exacerbates my pain, so why not give me a painkiller for a week that causes drowsiness?! Honestly, I have no faith in the medical profession. I’ve been placed in the “too hard” basket of cases because I failed to recover after a year of Melatonin and various anti-depressants.
Even at school, it’s preferable to talk about how you broke your leg, or why you spent a month in the hospital (anorexia or something) because it’s visible. But if I mention my M.E., I get told I’m an attention seeking b*tch, amongst other things, and that if I pretended I was healthy, I would be healthy. Or else my friends, who tried to include me, but I never knew them well enough for them to feel comfortable visiting a bed-bound person. Even my extended family doesn’t visit, they compare my illness to “being tired after gardening and babysitting” (this from a 65 year old aunt)
I do wish it were visible. People treat me differently when I’m in a wheelchair, but it’s mostly talking down to me, or wondering very loudly “What’s wrong with the weird girl in the wheelchair?” “I bet it’s cancer or something, but she hasn’t lost her hair yet.” It would be nice to have a well understood illness, let alone one that can be treated!
Alex´s last [type] ..Maths and other things
Alex – Wow! I am so sorry that you are dealing with all of this insensitivity! I truly am! This illness is difficult enough with doctors treating our minds instead of our bodies and then to have your extended family, friends, and school mates join in. That just has to be incredibly hard.
Unfortunately our society has embraced a belief in which we all look on the outside of people to determine who they are. For me personally, that is backwards. We need to look inside to see who people are. The outside is more often than not mis-leading.
Hang in there Alex. As you probably know, I am here and there are millions of others like me. I know you are not faking. You know you are not faking. THAT is what is most important. We cannot allow others to dictate our truth.
I hope you continue to visit and keep me posted on how you are doing!
I try to visit when I can, but I keep forgetting because you’re not on my Blogger dashboard! Thanks for your support, and the award nomination. x
Alex´s last [type] ..Holidays-
Alex – You’re welcome!