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Dear IBD-ers, You Have Rights Here's my story and why I exercise them regularly

I'm not an attorney, but I have worked on the sidelines in the legal world.


At 21, I found myself disclosing more information to employers, friends, co-workers and acquaintances then I was comfortable with. What my appointments were for. My disappointment over less then desirable test results. And more.

As a young adult who grew up with Crohn's I was uncertain how to protect myself, my records, my information. Luckily, I have not had it used against me in a work place to manipulate reasons for termination, for example. I do feel embarrassed thinking about how much others have known about my disease and the status of it at any given point throughout my college years.

I thought that to advocate for myself as a person I needed to disclose my medical condition, explain the disease, reason it out to others.

To advocate for myself as a person I've found more empowerment in exercising my rights then forfeiting them.

I felt comfortable with my employers and co-workers. We had Sunday dinner's and Game of Throne nights as a company. We went on camping trips and Black Saabath concerts for business meeting and employee "training". As medical demanded more of my time and attention, what was disclosed outside of work began to seep into the work place. This was fine, but I did not wish to discuss it at work.

So I just wanted to write this, for anyone who checks it out, new and old to IBD alike.

You have rights. You are a person. The only thing you are required to disclose will most likely be legally outlined, or be expressly written in contract you may sign for employment opportunities. If not there, you have no obligation to share your medical case, disease, or struggles with anyone, even if they ask, even if they probe, even if they beg - if you don't want to, don't feel comfortable, or have any uncertainty.

Consider how current disclosure may impact future relationships and environments.

I urge all to exercise your rights. Exercise their restrictions. Limit the people in your life or the life of your dependent until you feel absolutely CONFIDENT, not just comfortable, in what you are giving and who you are giving it to.

Now, my partner (who is my primary caregiver) is being manipulated by managers to disclose my medical information. They are pushing for letters, for scan results, for blood work results.

This is generally not legal. This is just nosy people at work. This is judgment at work. And no amount of disclosure will bring respect of circumstances, just more resistance, questions, entitlement. In my experience, the more unnecessary information volunteered the more complicated and strained workplace (and some personal) relations become.

I do not know how we will move forward in addressing the issue. I am comfortable disclosing some of my information - like offering a schedule of my appointments each month for them to consider as an employer in developing the schedule. What I do know is if any discussion does occur, I will be requesting to record the entire conversation. If someone cannot ask me questions on record, they do not need the answers and I will assume the questions they wish to ask are not within their legal right and it is mine to refuse disclosing ANY information until otherwise prompted.

It took me years to understand my rights enough to stand up for myself and stand by my own boundaries when it comes to my medical information.

Differing countries and states will have differing policy, but there are legal boundaries others cannot cross and you can advocate for to maintain personal sense of privacy and self-respect. They may ask, but you are not required to answer their entitlement.

If you are a caretaker - learn your rights and your dependent's rights. Your employer may not be able to request "proof" that time off is spent assisting or caring for your dependent as it is a violation of your dependent's rights as an individual.

If you are an employee know what you sign - and what your rights are in your workplace. Not just the accommodations that can be requested but the type of information and employer should not request and you are not required to disclose.

If you are disabled, understand that this does not dictate you disclose more then you may be obligated to. Not to the government. Not to your family. Not to nosy neighbors or partner employers. In fact, you may have MORE protection legally then pre-disabled status.
"Differing countries and states will have differing policy, but there are legal boundaries others cannot cross and you can advocate for to maintain personal sense of privacy and self-respect. They may ask, but you are not required to answer their entitlement."

In theory, I agree with you. But as you said, various countries and states have differing policies. Let me add, socio-economic situations. Please talk about such "rights" in most developing countries. I am sorry to say that would be construed as a joke.

Please do not take this otherwise. I understand you, but I request you to understand that about 1.5 billion privileged people in the developed world do not constitute the entire world.
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No it doesn't, but many who live in developing countries will not have access. Glad you got the point. And even within a country that does not legally protect medical information or individuals, that's important to know or understand.
You are aware of the circumstances. Better then walking around blind getting offended.
Every human being is aware of the need for human rights. But when they do not exist at a given place at a given time, the better option is to be aware of the fact that "rights" are non-existent.
Every human being is aware of the need for human rights. But when they do not exist at a given place at a given time, the better option is to be aware of the fact that "rights" are non-existent.
Ehh not only do I think that to be a misleading line of thought, but also well... Have you met every human being? Talked to them? Have you spoken to child slaves and asked if they believe they need human rights? I haven't.

Inherent human rights are not the purpose or importance of bothering to write about this. The concept of what encompasses rights, is broad. The purpose of this is for IBD patients, on this specific forum, with obvious access to - at the very least, the internet. As proven by holding an account on CF.

But for purposes of equal ground, here and the definitions at play in the context and scope I presented with my experience and progression learning to exercise and gather information concerning where my rights and privileges begin and end. I'm going to provide some clarifications, although I generally use rights as a blanket term to encompass both natural inherent and extended privileged rights.

Rights are always existent, whether individuals are aware or not they persist.

Privileges, on the other hand, do not. Privileges such as legal protection, or say - the amount of access to information. Or ability to speak freely and claim that yes, even if you deny the existence of rights for yourself or refuse to acknowledge, you still have rights just for living, for breathing, for being human and existing. They are very real. But far less in number then privileges - which many mistake as inherent right.

In the US it is a privilege to not be fired for a disability, not a right. It is extended by law, and can only be practiced within the extent of the law(s). It is a privilege to own a gun, not a right. It is a privilege to work. To own a home. To have access to social programs. It can be revoked at any time, by law. A privilege is an extended right that may be revoked, altered or otherwise changed.

A right can be practiced at any point without restriction, not necessarily free of consequence (like my right to refuse disclosing anything because I'm a person and can make that call but I am not free of consequences/ risk for choosing to exercise said right). Or, my right to always say "yes" or "no" regardless of circumstance.

If for example, I sign an employee contract agreeing to provide a doctor's note following three days or more absence for illness, and elect to not comply by providing said letter. That's my right. Such a contract does not override my right to choose. It only overrides my privilege to refuse and the restrictions on an employer to make such a request. At that point, upon breaking a contract, it is breaking privilege and it's then the employers choice to act upon my non-compliance by taking action such as suspension, firing, etc.

It's a matter of gathering and being aware of information. Anyone can gather as much information as they want, some have privilege to access a broader range of information, or gather information quicker then others.

Knowing where privileges and extended legal rights end (or do not exist) is as important as knowing where they begin no matter where you live or what is in place. To believe you have zero rights as a human.. means you have zero choice which is well... not a better choice, you are literally electing to forfeit choice and sovereignty of self with that line of thought.

Hope this makes what I was conveying a bit more universally accessible.
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In the U.S. We have HiPA which keeps our medical records private. If your partners work asks for those records. Just say that HIPA laws prohibit it.
In terms of co workers and friends, if someone asks. I tell them it's a digestive disorder and no big deal ( even when it is) I tell people that there are rough periods but they go away. Even if I feel like crap I will say I'm okay or I may say Crohns is kicking up buts it's almost under control. No one needs to know more
Am I missing something ? Someone posted about being aware of his rights in dealing w employers and life in general. The thread seemed to take a left turn somewhere. If we are talking about your rights regarding employers, in the U.S. , there are pretty clear rules and you can't be fired for having Crohns. If you have a lot of Dr appointments and miss work. Be proactive and try to make up the time somehow so that your employer understands that this is not a big deal. Even if it is a big deal, that isn't your boss' business. It's no ones business but your own.
Even at my worst , I will say that I am starting to feel better. I will tell them that Crohn's really isn't a big deal most of the time. That should be enough. You don't have to disclose your medical records or how you really feel. I don't want people to know how bad I feel. It's embarrassing to have to explain what I'm going through so I don't. WhAt you tell people outside of work still has no bearing on your job safety. The HIPA laws are there for those reasons. If you feel like you are being singled out, contact a labor attorney or if you are fortunate enough to be in a union, your union rep.
Am I missing something ? Someone posted about being aware of his rights in dealing w employers and life in general. The thread seemed to take a left turn somewhere.
Think smt is just bored? I've asked him to remove his last comment since it is unproductive and misleading to this thread purpose.

I ended up having to resign from my job and applied for disability which I was approved for and have been received the past year. My previous employer was great working with me - but it still wasn't enough and I was disappointed with my work and health quality picking the more important to focus on.

I could have limited the information provided and I'm sure they would have continued to do what they could, but I didn't know how to say no to them or that I didn't want to talk about it.

I think now after that due to my experience, while not bad, I probably will adhere to only disclosing anything I'd be required by law to once I can tolerate and reenter the work force.

Knowing the laws has been useful for me in gaining the language where I feel like I can say no respectfully and better communicate to others.

I do think it goes further then law - which is where smt may been sidelining.

I don't want people to know how bad I feel. It's embarrassing to have to explain what I'm going through so I don't.
I'm have been very open with having Crohn's in the past and what it entails for me. I don't regret it, but I'm starting to think it is not helpful which is the only reason I would want to be transparent.

I'm starting to think it is not needed/ necessary/ beneficial to have to share my story's details to advocate for myself or IBD. I think there are rights when discussing with family/ friends too. They aren't outlined by an outside governing entity, like legal rights. It is good to know it's okay to not provide explanation or feel like others always need to "understand" even if they may be curious; I think it's important long-term due to nature of the disease and how it changes with so many variables to remember it's okay to retain and feel just as privileged to not give every detail or any at all for that matter.

Caretakers and those who are dealing with IBD-ers can also take initiative to understand their rights (and responsibilities) standing on the other side.
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Staff member
Thanks for the tag. :)

Everyone please remember that this forum is meant for support first and foremost. While debate is allowed it's best to keep it respectful and on topic. If it's getting heated then it's best to walk away and if it's off topic then making a new thread or having discussions in private would be best. Let's stay on topic please. Thank you.
Unconstructive content removed.

This is an important thread that I don't think I've ever seen discussed before.
This is the kind of disease that can be frustrating especially when we are trying to live a normal life. We don't want to live our lives lying on a couch unable to contribute to society. Personally I want to live a normal life and will do whatever I can. I don't tell people about Crohns and gamble that I can get through every day. There are days I literally drag myself out of bed and give everything I have to get through the day. For me, I would rather do that rather than tell people how bad Crohns can be.