Community Forum

 Reply posted for AnnMarieZzz.

Here is the letter PART 1:
Dear ,

If I was a Vietnam Veteran who lives life from a wheel chair would you stand up for me against discrimination? If I was African American and was told by an employer I could not be hired based on my skin color would ...you stand up for me against discrimination? If I was born with a learning disability and was told by my school that I was not allowed to continue taking classes would you stand up for me against discrimination? What if I had a trendy disease like AIDS or Breast Cancer; would you stand up for me against discrimination?
What if I told you I had Crohns Disease? What if I appeared normal to you? Would you stand up for me?
I am writing you this letter because diseases like Crohns Disease and other invisible disabilities effect many people in your community and not enough is being done to support and protect its sufferers. It is time to wake up and smell the coffee. Every day, people in your community undergo discrimination in the workplace and school system because of ignorance about the severity of their struggles. It is very hard for healthy and able bodied people to understand the effect Crohns and other auto-immune disorders like Multiple Sclerosis and Lupus have on its sufferers and how the inconsistencies may occur. I imagine being in your shoes it would be difficult to look at someone who “appears” healthy and understand why someone may need the type of accommodations they sometimes need. People with these invisible disabilities are tough skinned; they learn to smile through their pain and enable ignorance by allowing people to believe what they want. However, as time goes instead of getting easier it is only getting worse for them.

 Reply posted for alanschachter.

It has nothing to do with your disease being under control. The idea of this letter is to benefit many people not just me. And I think Crohns sufferers need to be careful to understand that some of us have had to endure more suffering from this disease and its complications and have not always been able to get and keep it under control. It's easy for someone to say "Oh nutrition" "Oh new meds". Crohns is an autoimmune disorder; and white blood cell deficiencies and just not that simple. Some of the Crohns patients who have had an easier time can take a blind eye to how extreme this disease can get and what effect that can have on your life. I am not sure if I mentioned or not in my note that I am 24. I was diagnosed at 18 years old. Went from completely healthy to completely ill at 18. I never got to live my life normally, never got to build up 10 years of work contacts I could depend on. I have to go out into the world as a sick person with no one to verify that I am worth the hassle.  And I had to go to college as a sick person; and college's are not like state run grade and high schools I have NO protection in these places. I wake up nauseous and have to run to the bathroom a couple times before getting out the door making me run late to my class and when I get there my teacher locks my out and refuses to take me work. Is that fair?  How about being told be your college it is an elective to be there; and "if I can't 'be there' than don't apply". Is that fair? Should that be ok? The young sufferers are going through something very different. I watched a 22 year old friend with Crohns commit suicide last year. I am watching another 21 year old friends with Crohns that is now so depressed that he dropped out of school and hasn't worked in 8 months. I formed a drug addiction from the depression and spent 2 stays in rehab centers....and when I got there; I was not the only person with Crohns saying the same thing I was saying.

 Reply posted for AnnMarieZzz.

It is not just people with IBD or lupus or etc., etc. It is anyone with a chronic health condition. Any chronic health condition. I also have spinal cord damage and am black listed by the medical community. They have closed the door and written me off. Still, we have to stand up for ourselves and make ourselves be heard. We have to fight our chronic health condition and the world we exist in. There are so many people in our category. You have to play the cards that you are dealt. You have to do the best that you can. Life is still a wonderful GIFT.

                                My best to you.

                                                 Joe

 Reply posted for alanschachter.

Alan you are so right. But look up Dr Sarah Myhill to see why the doctors are so afraid to step out of line.

 An amazing doctor and world expert on cfs with huge patient support - as a result of complaints made to the gmc she has no insurance to pay for her defence. Big sanctions were placed on her ability to practise in the week before our general election while the press were busy elsewhere.

 Reply posted for AnnMarieZzz.

Here is the Letter PART 3:

We become depressed, we begin forming drug and alcohol dependencies, we contemplate and attempt suicide, and we buy into the hate and allow our lives to remain stagnant and unfulfilling. We start to believe we are not dependable, that we will never make it, and that nobody will ever want us or be willing to deal with us”.
Enough is enough it is time to fight back; to fight the ignorance, the confusion, the selfishness, and the discrimination. I challenge you to stand up and care about these invisible disabilities; to educate your community and encourage local businesses and schools to change their attitude about Crohns Disease, Multiple Sclerosis, and Lupus. I challenge you to stand up for people like AnnMarie Imbordino who have suffered greatly under your own roof. What can you do to stand up against discrimination?

Sincerely,

Alright everyone I NEED your help!!Here is the Letter PART 2:

In the words of

AnnMarie, Crohns Disease sufferer: “This is not just a matter

of people being treated unfairly; but a matter of life or death. I

throughout the years have met many other people like me with Crohns and

similar auto-immune disorders and our stories are all very similar.

Problems with keeping friends and romantic relationships, unsupportive

families, hard time keeping a good job, hard time finishing school, and

insurmountable amounts of debt that no twenty year old deserves to have.

And on top of all that, having to deal with the mental and emotional

trauma of being sick and realizing that your are limited and can not be

like everyone else. I could not begin to explain what it feels like to

be alone in a hospital bed at 18 years old and being told by a heartless

doctor that you have a serious and possibly terminal illness. But what

hurts even more than the doctors, is that when you get out into the

world (school, work, ext) you realize that the world expects you to just

stop living your life and go back to your hospital bed and die. When

they say things like, “well if you are that sick maybe we should find

someone else to work here we can depend on-manager from Ed Debevics” or

“well if you are that sick than you will never make it in the real

world-teacher from the College” or “we can’t be giving shifts

to people we do not know will always be here; we need to give shifts to

the people who have been here and want to be here-manager from a local restaurant or “well I just can’t deal with the always being sick; I need

to worry about myself-close friend.” Do you hear these words in your

life? I hear them every day and everywhere. And being under this type of

constant trauma pays a toll of people like me.