I’m am only recently ill, but we went through this with my husband. He had advanced neuropathy for almost 10 years, and insisted on working, though the doctors had urged him to file for disability. When our twins were 6 weeks old, he began having strokes. Almost immediately there was no chance of him returning to work. Within a year, we had lost our home and had to move into public housing. We moved half-way across the state.

The one time my parents came to visit (in the past 7 years we’ve been here – once), my dad made a comment about if my husband were a man he’d get off his lazy a$$ and get a job.

That’s when we let them know that comments like that were why we had moved so far away, and will never go back for good.

Now, I’m dealing with all this, too. I have PTSD from the surgery (C-section), plus having newborn twins, plus husband getting very sick; I also have CFS and fibromyalgia, and very painful arthritis in my hips.

I have SLE, JRA, UC and Fibro.  All are “invisible”.  I also have 2 knee replacements, and am only 51 years old.  When I asked my Dr. for a handicapped license plate application, she said “Finally, I have been hoping that you would ask for one!!”; unfortunately, the public is not as accepting.  I get dirty looks, comments, and notes left on my car every time I  use a handicap space.  Initially I avoided using the spaces, but eventually, I realized that I was only hurting myself by letting people with small minds affect my behavior and my life. 

I also fired a Dr. once because I heard him say to a Medical Student “she THINKS she has Lupus, but all her test results are negative, so it’s just a bunch of nonsense”.  I walked out of his office that day and never returned. 

Don’t lose hope. You learn who your friends are when you: become sick, have kids, fail at something. What is important is not the friends you don’t have (they were never really your friends). What is important is the friends you Do have. That includes new ones that DO understand what it means to suffer with this type of silent disease. You have to change your understanding of life – think of it this way: you come to know the truth when you become sick. Everything else was false (not what it seemed).

Yes many doctors refused to treat me because I didn’t “look” sick. One ENT doctor at Kaiser accused me of causing creating my vertigo and neurologic problem myself – she actually wrote on my medical record that I had “Q-Tip trauma” she claimed I damaged my inner ear by myself using q-tips!

It may vary from state to state, but in the state I’m from you don’t need to be on ssi to be eligible for hc parking.  You do need a doctor or chiropractor (or whatever other medical professional may be authorized in your state by the dept of transportation) to sign off that you meet the hc parking criteria.  I do have a hc placard, but also “don’t look sick.”   Just passing this along because the hc placard can  help so much…

I have autism, PTSD, asthma and hypermobility. I’ve gotten negative reactions for acting rude when I had no intention of being rude (really, I think people should be able to tell the difference between rudeness that is clearly intentional and rudeness that could just be poor social skills). I’ve gotten negative reactions in karate class for spontaneously falling when in positions most people can hold without falling (my knees tend to buckle, and autism affects my sense of balance) and for continuing to make mistakes longer because I have difficulty learning new motor skills. (They’re a lot more understanding of the difficulties my fat, middle-aged father has with karate.) I’ve gotten negative reactions for overreacting about things that most people don’t mind, which remind me of my traumatic experiences or else involve something that is especially unpleasant for autistic people (sensory issues and dislike of change).

Fortunately, my immediate family is very understanding.

Yes, constantly, actually. Mainly by my own parents. (“Harra, you’re nineteen years old, you’re too young to need a cane to walk!” “If you just exercised more, you wouldn’t be in such pain all the time!” “Stop faking your limp.”)

Then there are the people at school, who tend to grab my cane, and examine it without asking.

For the record, I’ve got a bad leg from a fall back when I was fifteen. Other than the cane, I look like a normal, nineteen year old girl. Most people seem to think it’s impossible for someone my age to require assistance with walking.

I have fibromyalgia, rheumatoid arthritis, osteoarthritis, diabetes, asthma and other health problems.

I have been told I do nothing,leaving it all to my husband, and just ‘lie around all day.’  Also my steroids I take are obviously not working or I would be fit and healthy like athletes who take steroids and they are strong. I should just stop all my medications and take cannabis! Really helpful! But it has made me push, push, push myself to do more than I can really cope with. My husband is not happy about these comments and says, NO! You can’t do it I have to pick up the pieces if you do too much. I use all my spoons too quickly, borrow from the next day and run out by the end of the week. Because RA, fibromyalgia etc are basically ‘hidden’ illnesses  I suppose I look OK but inside I am falling apart physically and emotionally.

as for how i’ve handled things, i have overused the Ombudsman service and even been treated bad by one of them – but i called her supervisor. i’ve called everyone’s supervisors from my insurance company to my medical supply companies. it works out sometimes, but others, as you can notice from my tone in my other posts.. causes me much more stress that i can handle even on a good day, i’m in therapy, and i’ve tried ad nauseum to talk to my family about how i’m different and could really use some extra leeway, compassion, or whatever you call it. yet here i am, still alone with a body full of pains, wounds and infections, and no more patience for begging medical professionals to do their jobs

when i cry, i’m being a baby. when i ask for help, i’m an adult that shouldn’t need help with daily tasks. when i get upset, i’m being a b*itch, and when it gets too much and i want to shut everyone out for a bit, i’m being irrational & get punished with refusals to give me rides to appts or call doctors on my behalf, or even pick up my prescriptions. this is hell. i wish someone would just treat me like i have a serious medical condition and emotional repercussions from it, rather than a petulant child that wants to boss everyone around for sheer enjoyment, that, i’m afraid, will never happen until they find a cure for ignorance and apathy towards invisible illnesses. i desperately need help without the emotional manipulation and vindictiveness that has come along with it the whole time. i need a trusted friend,  family member, or an advocate that can help me through this without psychologically harming me in the process, or withholding medical services when they feel i have “an attitude”

I
wrote this story to help my friends and family understand what I go through
as a person with Bi-polar disorder.The Well OF Life:

A Bi-Polar Story

Once upon a time there was a
magical well called The Well of Life. 
This well contained all the material needs of this world.  The well provided these needs, for a week, to
any family that could take two full buckets of its magical waters home with
them.  The well was located in a valley,
surrounded by gently rolling hills.  Two
families lived on the eastern side of these hills. The names of the families
were:

The Normies and the Bi-Polars

The Normies and the Bi-Polars seemed very similar at first glance. The
families each had a mommy, a daddy, and a son. That is where the similarities
ended. Each family set off for the well on Monday. The Normies set off bright
and early and started their trip up a gentle path with little to block their
way. The Bi-Polars tried to set off early, but they didn’t sleep very well and
had a hard time getting out of bed to face yet another day.  The hill that was so gentle for the Normies changed
completely as soon as the Bi-Polars set foot on it.  The gentle grade became steep, and rocks
sprung up to stub toes and trip heavy feet making the trip a bit more difficult
for the Bi-Polar family.

 This
is how a relatively normal day can feel for me when my Bi-Polar goes
unmedicated.

The Normies soon make it to the well and fill their buckets as the
Bi-Polars continue to struggle up the hill. The Normies openly disparage the
Bi-Polars on their way back, telling the Bi-Polars how lazy they must be.  The Bi-Polars finally make it to the well and
fill their buckets, but when they turn back to the hill it has changed once
more.  The gentle hill is now even
steeper and covered in thorns.  Biting
insects buzz angrily on the slope, daring the Bi-Polars to make the climb.  The hill is their only way back home, so the
Bi-Polars must grit their teeth and suffer over the hill, though sometimes they
just cannot do so, and collapse in tears, today they brave the hill.  They start their journey through the thorns,
getting bitten and scratched along the way. 
Their buckets become tangled in the thorns, and often they lose half the
water they have collected.  They do make
it to the top eventually spirits broken and in tears.

   This is how a depressive day can feel for me, when there is no joy in accomplishments and even the simplest task can be overwhelming 

The hill changes once more and is now covered in beautiful and sweet
smelling flowers.  The insects are gone
and the Bi-Polars feel instantly uplifted and euphoric.  They feel as if everything is now right in
the world and nothing could ever go wrong. 
The family starts running here and there down the hill among the
flowers.  The buckets are all but
forgotten as they joyously stop here to sniff a flower or there to make a daisy
chain.  The memory of the time before is
not forgotten, however, and tempers run high and hot.  They snap at each other constantly even as
they have fun, laughing and smiling together. 
The Bi-Polars eventually make it home, long after the Normies are safe
in their beds. Their Pails now contain only enough for a day, if that, due to
their reckless behavior.

This
is how a manic day feels to me, when a short temper, reckless and impulsive
BEHAVIOR and racing thoughts occur.

            The
Bi-Polars must now repeat the trek to The Well of Life again and again, while
the Normies stay home and enjoy the fruits of their labors.  Life for the Bi-Polars is hard but they still
laugh and love, work and play, hope and pray, just like the Normies do.  The Bi-Polars, if given the right combination
of medication and therapy, can live fruitful lives. They only require
understanding and compassion from the Normies, who often do not offer any
support.

The Bi-Polars could do just as well as the Normies if only
someone was willing to offer the help they need.

THE END

            I
wrote this story to help my friends and family understand what I go through as
a person with Bi-Polar disorder. The truth is many “Normies” see the symptoms
and setbacks of Bi-Polar disorder as laziness, selfishness, and/or deliberate
disobedience.  This problem is even more
prevelent in “Normie” parents who can’t understand that the forgetfullness and
impulsive behaviors are not commited by choice. 
This can make life even harder, as accusations of selfishness and
laziness become internalized and the “child” of these parents comes to belive
they are what their parents say they are.

            “The
Well Of Life:  A Bi-Polar Story” is the
story of my struggles with Bi-Polar diorder but many mental illnesses present
similar difficulties, to put it another way. 
A mentally ill person must climb the mountain, while all the “Normies”
out there have a pass for the tunnel.

            To all
you normies out there, please remember:

Mental Ill ness is AN ILLNESS, it is NOT A CHOICE, and
it is NOT  A CRIME

Please try to be more understanding: Life, with a mental
illness, is hard enough as it is.

To my fellow
sufferers,  you are not alone and you are
not a worthless or hopeless cause. Remember:

BE STRONG WHEN YOU CAN

CRY WHEN YOU NEED TO

AND NEVER EVER BE ASHAMED
OF WHO YOU ARE

  DON’T BE AFRAID TO CHASE YOUR
DREAMS

Thank you.

im 21 with lupus, i am gong to be a senior incollege this fall. this summer i work for my schools admissions office. They all know i have lupus and since i am young they treat me like a child always making sure i eat or wear a hat when i give tours. i know they mean well and only want me to feel comfortable but sometimes they underestimate me and stick me doing minial taske swhen im fully capible to do more.

I’m hoping you have more good days than bad….seems like mine are getting fewer and farther between. I’ve had very bad days this week, but today, I’m feeling pretty good. That of course makes me more active and I’ll have to pay for it…sigh. 

I’ve gotten the same looks you’re talking about and I know it is frustrating. But here’s how I feel about it…they don’t know me, they know nothing about me. If they’re gutsy enough to look at me with disdain, I think they should be gutsy enough to tell me so….and if they do this, I can tell them to go home and look up fibromyalgia and emphysema so they can understand why I’m using this damned cart. God knows I’d much rather be up and walking through these big stores like I used to but I JUST CAN’T DO IT ANYMORE.  So until they have the guts to do that, they can just cross their eyes at me all they want and it l let it slide right off my back. ;-D

Don’t let ’em get you down….it’s nothing but ignorance on their part. And even though it’s incredibly frustrating, people are gonna do what people are gonna do. Just flip ’em the bird in your head and you’ll feel much better…! lol 

Hope I haven’t offended in any way… 🙂