The Unseen Hurt..

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer and the list goes on..

While individuals with visible illnesses—those requiring canes or wheelchairs or causing physical manifestations like hair lost from chemotherapy, tremors and speech irregularities from things like Parkinson’s disease do encounter sociocultural difficulties, their obvious medical conditions typically get support and understanding from others. However, for those with invisible illnesses, such support may not be as forthcoming. And for those with invisible illnesses that remain controversial in the medical community and public eye, support may not come at all...

I was born with a invisible illness i look just like everyone else, I walk,talk and fit right in with a crowd of people but inside im so diffrent im not like everyone else,I could be your friend or neighbor or sister there is alot of us out there with invisible illness..

When people think of challenges they have to overcome, some never think of these challenges, something as simple as breathing or walking. We all take for granted life’s smallest gifts..

My Story::

I use to be angry,Why am i like this?

For most of my life I tended to suppress all my emotions about the condition and was guarded about telling people about it. I never wanted anyone to feel sorry for me, or to view me as the "ill person". But because I knew that life was likely to be short i decided to educate people on this invisible illness ..

In my 20s I saw only a hopeless end. In the lead up to my 30th birthday, my fixation over my life expectancy was exacerbated by the deaths of friends with CF. With each departure, I questioned why I was still here when they were not.

I was also going to end my battle with Cystic Fibrosis, a genetic lung disease that has destroyed my lungs.This disease has left me with only 30 percent of my lungs functioning.

My diseased lungs are always filled with bacteria from constant lung infections, which has ate them away to nothing. I was going to end my struggles with difficulty breathing, excessive coughing, oxygen dependency, mucus build up, the need for several machines, a feeding tube to maintain weight, and IVs. I was going to breathe again. I was going to feel my age, instead of a helpless, trapped adult that was caged in a lifeless body and all i felt was depression..I decided i was going to live!

I went out and bought a low impact mickey mouse exercise DVD for kids and started exerciseing 2 times a day every day ..This improved my physical bulk and strength.This also helped with my depression..

Then i went to see a dietitian to figure out how to stuff 4 thousand calories into this skinny body each day ..We worked it out and now my weight is up this made me feel stronger..

Im now 38 and still going strong with a will to live that unbeliveable i refuse to let this invisible illness get the best of me!

The end picture is never give up, always keep fighting as life is so amazing and such a gift that you need to fight for it.

Now that ive told you about my struggles id like to hear about yours..It doesnt matter if its a invisible illness or individuals with visible illnesses..We all stand united and committed to becoming healthy mentally and physically.. Also a special thanks to Asktheanimals he inspired me to write this thread after a post he wrote to me in another thread..peace and love,sugarcookie1


A GIFT TO ALL OF US WITH INVISIBLE ILLNESSES

I didn't watch your video...but I read the post.I think the one word that was missing was " depression".

Maybe I'm wrong I don't know.But that's what I got from it.

Originally posted by nightstalker78
I didn't watch your video...but I read the post.I think the one word that was missing was " depression".

Maybe I'm wrong I don't know.But that's what I got from it.

nightstalker78
depression is included ive struggled with it all my life..peace,sugarcookie1

Mistake.

Originally posted by nightstalker78
reply to post by sugarcookie1

 

I can tell as I said that's what I got from it.I've been there.I think for me your title pretty much summed it up for me too.

Maybe I'm wrong.I just happened to be listening to The Unnamed Feeling when I read your thread,which is why I didn't watch the video.

ETA: I know you want us to share our struggles and what not on this thread but I can't.I've shared some and I don't really want to repeat myself.

edit on 27-4-2012 by nightstalker78 because: (no reason given)

nightstalker78
I just spent 2 hours writing this thread for you to stop in and tell me.. I can't.I've shared some and I don't really want to repeat myself...Thanks for stopping in and sharing peace,sugarcookie1

Lets not let this thread go to thread heaven ..peace,sugarcookie1

wow this place is dead tonight i cant even get my thread to even be looked at This is a first for me..did everyone head to there under ground bunkers and i didnt get the memo:

Hey sugarcookie1

I spent most of my life avoiding psychiatrists and the such like, I didn't want to be labelled, especially not with a 'stark staring mad' label. Then about six months ago I had a momentary about-turn, and wanted a label. I had spent so much time coming to terms with myself, understanding the things about me that didn't work in the same way as other people seemed to, but I got sick of having to explain to others that while I seem to function really well, it is only because of all that hard work, and that 'never giving up' on life that has enabled me to do so. And so, I thought, if I went to a professional, got confirmation of the diagnosis that I already know is my 'label' that I could just say 'here this is what I am', that it would save me having to go through all the heartache over and over again to get people to understand why sometimes I do shut down, no matter how hard I try to avoid it. Speaking to my friend about it though, I eventually decided against it, people see what they want to see anyway, and instead, I keep those that understand close, and those that won't at arms length. It is currently meaning that my family aren't speaking to me, because I told them I wasn't willing to pretend that their behaviour wasn't a factor in triggering the unhealthier aspects of my 'label'. They won't stop lying and being manipulative, and I won't stop calling them out on it when they are. But I am much happier and healthier now, so you win some, you lose some. It's very sad, but sometimes those are the breaks when you 'choose life'.

Thanks sugarcookie1, for this thread, you have, as always, my admiration and respect. My trials are small compared to yours, but it is people like you that give me the power and determination to overcome my own little molehills.

Originally posted by Biliverdin
Hey sugarcookie1

I spent most of my life avoiding psychiatrists and the such like, I didn't want to be labelled, especially not with a 'stark staring mad' label. Then about six months ago I had a momentary about-turn, and wanted a label. I had spent so much time coming to terms with myself, understanding the things about me that didn't work in the same way as other people seemed to, but I got sick of having to explain to others that while I seem to function really well, it is only because of all that hard work, and that 'never giving up' on life that has enabled me to do so. And so, I thought, if I went to a professional, got confirmation of the diagnosis that I already know is my 'label' that I could just say 'here this is what I am', that it would save me having to go through all the heartache over and over again to get people to understand why sometimes I do shut down, no matter how hard I try to avoid it. Speaking to my friend about it though, I eventually decided against it, people see what they want to see anyway, and instead, I keep those that understand close, and those that won't at arms length. It is currently meaning that my family aren't speaking to me, because I told them I wasn't willing to pretend that their behaviour wasn't a factor in triggering the unhealthier aspects of my 'label'. They won't stop lying and being manipulative, and I won't stop calling them out on it when they are. But I am much happier and healthier now, so you win some, you lose some. It's very sad, but sometimes those are the breaks when you 'choose life'.

Thanks sugarcookie1, for this thread, you have, as always, my admiration and respect. My trials are small compared to yours, but it is people like you that give me the power and determination to overcome my own little molehills.

Biliverdin
Thank you for posting as always..I don't think any of us want to be labeled i just got to the point i didn't care anymore i felt it was better to educate people on what the illness was then to keep fighting it and making excuses on why i cant go out when im sick or just to tired to get out of bed..

But your right people see what they want to see and sometimes it doesn't matter how much you tell them it just doesn't register and sometimes that makes me even more depressed..

My family understands to a point but then they think im just avoiding them and sometimes i do i get tired of all there advise on what i should be doing i figure its my body and im going to do whats best to keep it going and ive done good for making it this far..

I'm sorry to hear your family ist speaking to you that has to be hard because depression is hard and that justs adds to the problem..But its good you call them out on it sometimes you just have to do that to keep you healthy its your body and mind..

Your trials are not small compared to mine we all have hills to climb and over come you just need to keep hope is how i figure it its up to us to get healthy..peace and love,sugarcookie1

reply to post by sugarcookie1

I galadofwarthethrid approve of this thread and this message...

Kick ass sugarcookie and take names.

I would like to contribute to this but I am like totally normal, anybody that says otherwise is a disinfoagent spreading misinformation about me and you should not believe them, and if they persist they will be in err, for there hope will end there.

I have lived through some visible hurts, and some invisible hurts. That is all I will say on it

But ya sugarcookie more thumbs up.

reply to post by galadofwarthethird


Of all the adjectives that I may have used to describe you, normal would probably be last one I'd choose.

Normal is dull, normal lacks character...and you are far from it, Petal. And, of course, I mean that in the nicest possible way

Originally posted by sugarcookie1
Thank you for posting as always..I don't think any of us want to be labeled i just got to the point i didn't care anymore i felt it was better to educate people on what the illness was then to keep fighting it and making excuses on why i cant go out when im sick or just to tired to get out of bed..

But your right people see what they want to see and sometimes it doesn't matter how much you tell them it just doesn't register and sometimes that makes me even more depressed..

This is why it is so important to ensure that we do away with superficial relationships, it can send you right back to square one, when coming out from your cocoon to find that you have been bitched about, or others have just made assumptions about your absence. You need people around you that understand that it is hard enough alone to drop back and take the recovery time you need, watching from a distance as the world turns without you, without then having to justify your absence, when you're ready and raring to go again and make up for that lost time.

I don't mind being labelled, so much as I mind it being assumed that because I can function sometimes that it is just me wallowing for a while, or milking sympathy. The last thing I want, ever want, is sympathy, just the space to put myself back together when I need to. Sometimes there is nothing lonelier than being in a crowded room full of indifference.

Originally posted by sugarcookie1
My family understands to a point but then they think im just avoiding them and sometimes i do i get tired of all there advise on what i should be doing i figure its my body and im going to do whats best to keep it going and ive done good for making it this far..

I'm sorry to hear your family ist speaking to you that has to be hard because depression is hard and that justs adds to the problem..But its good you call them out on it sometimes you just have to do that to keep you healthy its your body and mind..

My mother has some mental health issues of her own, as is often the case in these matters. Things like this often get passed down from generation to generation. Whereas I hate being the centre of attention, and feel disempowered by sympathy, my mother thrives on it, and has fallen into the victim rut to the extent that she now feels the need to fabricate tribulations, generally by accusing others malignly. Both my brother and step-father would rather not confront her, and prefer to ignore the situation. I have suggested that we as a family sit down and try to resolve this, but in return I was told that I was clearly suffering from depression and should consult a doctor as a matter of urgency. My Nan went the same way, and her mother before her, so I know to some extent what to expect, but for me, it is more important that I set the right example to my son and ensure that I do not become a burden to him. They are adults and have been given every support and opportunity to help themselves, but if they don't want to move on, I can't make them.

I feel that cycles and rules are there to be broken, given the will to do so. I was told once, that is you feel as though you are being tested, then you are. This situation is my hardest test yet though, I have never been comfortable with powerlessness, but that is what I have to come to terms with.

Originally posted by Biliverdin
reply to post by galadofwarthethird

 

Of all the adjectives that I may have used to describe you, normal would probably be last one I'd choose.

Normal is dull, normal lacks character...and you are far from it, Petal. And, of course, I mean that in the nicest possible way

Lies all lies, I am totally normal. You lucky that you some how ended up on my friends list, which by the way I have no clue how that happened, in fact I don't know how most of them happened. But who knows what I else I might do besides point out your slanderous miss-info if it were not so.

Your little winking emoticon does not fool me. I to can play that game.

reply to post by galadofwarthethird


Rephrase...if you were representative of what is normal, then my world would be a better place, or at least humanity would be a whole lot more interesting, generally

I think I may just be getting myself into deeper doo-doo

I'd better quit while I'm out of swiping distance...

reply to post by Biliverdin


Oh I see, my bad. Bad knee jerk reactions! I'll be quite now!
Before I say any more stupid stuff.

Hey Biliverdin thanks for the complement.

Rephrase...if you were representative of what is normal, then my world would be a better place, or at least humanity would be a whole lot more interesting, generally

When you put it that way! Well, Yes! I am pretty dam awesome.

reply to post by sugarcookie1


thanks for sharing..kx)

Originally posted by galadofwarthethird
reply to post by sugarcookie1

 

I galadofwarthethrid approve of this thread and this message...

Kick ass sugarcookie and take names.

I would like to contribute to this but I am like totally normal, anybody that says otherwise is a disinfoagent spreading misinformation about me and you should not believe them, and if they persist they will be in err, for there hope will end there.

I have lived through some visible hurts, and some invisible hurts. That is all I will say on it

But ya sugarcookie more thumbs up.

galadofwarthethird
Normal people never think for themselves, they play follow the leader their entire lives and freak out when confronted with any situation they were not trained to deal with.
Thats to bad your normal that has to be so boreing ..Its the worst thing you can be.( Ever)

Lets see what is normal.. It seems as though the weirder you are, the more you fit in...so that means that weird is normal. If weird is normal, then that means that if you are normal you are weird, so in order to be normal you must be weird, which makes you normal all over again. Which is weird. It is a perpetual cycle.

Whew that was a mouth full Anyhow kidding aside thank you for posting ya made me smile and yes lets kick ass! peace,sugarcookie1

Originally posted by Biliverdin

Originally posted by sugarcookie1
Thank you for posting as always..I don't think any of us want to be labeled i just got to the point i didn't care anymore i felt it was better to educate people on what the illness was then to keep fighting it and making excuses on why i cant go out when im sick or just to tired to get out of bed..

But your right people see what they want to see and sometimes it doesn't matter how much you tell them it just doesn't register and sometimes that makes me even more depressed..

This is why it is so important to ensure that we do away with superficial relationships, it can send you right back to square one, when coming out from your cocoon to find that you have been bitched about, or others have just made assumptions about your absence. You need people around you that understand that it is hard enough alone to drop back and take the recovery time you need, watching from a distance as the world turns without you, without then having to justify your absence, when you're ready and raring to go again and make up for that lost time.

I don't mind being labelled, so much as I mind it being assumed that because I can function sometimes that it is just me wallowing for a while, or milking sympathy. The last thing I want, ever want, is sympathy, just the space to put myself back together when I need to. Sometimes there is nothing lonelier than being in a crowded room full of indifference.

Originally posted by sugarcookie1
My family understands to a point but then they think im just avoiding them and sometimes i do i get tired of all there advise on what i should be doing i figure its my body and im going to do whats best to keep it going and ive done good for making it this far..

I'm sorry to hear your family ist speaking to you that has to be hard because depression is hard and that justs adds to the problem..But its good you call them out on it sometimes you just have to do that to keep you healthy its your body and mind..

My mother has some mental health issues of her own, as is often the case in these matters. Things like this often get passed down from generation to generation. Whereas I hate being the centre of attention, and feel disempowered by sympathy, my mother thrives on it, and has fallen into the victim rut to the extent that she now feels the need to fabricate tribulations, generally by accusing others malignly. Both my brother and step-father would rather not confront her, and prefer to ignore the situation. I have suggested that we as a family sit down and try to resolve this, but in return I was told that I was clearly suffering from depression and should consult a doctor as a matter of urgency. My Nan went the same way, and her mother before her, so I know to some extent what to expect, but for me, it is more important that I set the right example to my son and ensure that I do not become a burden to him. They are adults and have been given every support and opportunity to help themselves, but if they don't want to move on, I can't make them.

I feel that cycles and rules are there to be broken, given the will to do so. I was told once, that is you feel as though you are being tested, then you are. This situation is my hardest test yet though, I have never been comfortable with powerlessness, but that is what I have to come to terms with.

Biliverdin
Superficial relationships are the worst ..There draining and life sucking its most of the reason i got a divorce and probley why i alienated most of my family most of the time its not that i don't love them its just they don't know when to back off ..

And it really makes me mad when i do come out of my as you say (cocoon) they have made there own assumptions about my absence ..One family member told me its because i don't like them or there company..They don't stop and think maybe its because i was to sick or to depressed to sit and smile through a family dinner pretending to be feeling on top of the world..

I don't want sympathy either just my own personal space till im back up and running again ..Then i go over to a family dinner and i get oh you poor girl what can we do to make it all better ..Well they cant i don't want anyone holding my hand and feeling sorry for me i want to be independent the one with the power..They just don't get it..

And NO you cant make people that don't want to move on do that ..Its up to them some people just like to wallow in sympathy and stay that way and expect everyone to feel sorry for them it gets to the point i put those people on my ignore list its life draining..

I'm sure you are a great example to your son..You know you don't want to be a burden to him ..You know there is support and opportunity for help and you strike me as a strong proud person..You just want your space and i understand that completely..
peace,sugarcookie1

Originally posted by purplemer
reply to post by sugarcookie1

 

thanks for sharing..kx)

Thanks for posting..And your welcome peace,sugarcookie1

reply to post by sugarcookie1


They just don't get how exhausting (and frustrating) it is having to justify yourself repeatedly, do they? It sometimes feels as though it goes in one ear and straight out the next. I've tried to explain to certain people how much work it is, how hard it is, to do the day to day things, but because I make it look effortless, because I am so good at putting 'my face on' they forget, and then you end up regreting letting them in on the secret. And then there are those who know, but then will use it as a means to push your buttons, because they like to see you fall so that they can feel all powerful and such, and prove just how weak you are in reality, as if we didn't know that already. You're damned if you do, and damned if you don't. Haha...a never ending cycle, until you get to the end of your tether and say '# off'. Sorry to be blunt, but that is how I feel right now.

Thanks sugarcookie1, you don't know how good it is to talk about these things with someone who understands.

Peace and love to you too, sweetie.