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Ulcerative Colitis
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Posted 2/16/2023 2:07 PM (GMT 0)
Hi, I’m wondering if people disclose their diagnosis to HR departments at work? I discovered this past weekend that my employer accidentally switched me to a new health insurance plan on Feb 1. It’s been a mess and very stressful. My employer is working to clean it up, but they’re not acting with the sense of urgency that I’d expect. Part of it is that I suspect they think I’m a normal, healthy, 30- something year old. I don’t look sick. But I rely on my Entyvio and several other meds and doctor appointments.
We have a new HR person starting next week and I’m considering disclosing to her when she joins the company. Have others had good experiences disclosing?
Right now only my boss knows and she has been incredibly supportive, but I have fears about filling HR in as well.
Thank you!
Posted 2/16/2023 4:23 PM (GMT 0)
I'm sorry to hear about your insurance woes. I hope HR figures it out quickly!

I disclosed my diagnosis to my first boss when I started my first job. She was very supportive. That was a few months before the pandemic and I was on Entyvio at the time. Now I'm basically fully remote and on Xeljanz and I don't remember how much I've disclosed to my current boss (same department/company). Fortunately, the company I work for, or at least my department, has good work-life balance and I've had the time and space for doctor appointments and colonoscopies and such. It might help I work for a pharmaceutical company, but I'm still at my first job, so I don't know how things compare elsewhere.

I haven't needed to disclose anything about UC to HR yet.
Posted 2/16/2023 4:29 PM (GMT 0)
How on earth did this happen, who is in charge of handling the insurance at your place of employment? Will the new person taking over HR be handling insurance issues? If so, I would go to this person & explain the screw up & get his/her assistance on getting this mess straightened. Like you said, you don't think they are in much of a hurry getting this taken care of.

Good luck.
Posted 2/16/2023 4:54 PM (GMT 0)
In the U.S. IBD legally became a "protected" condition under the Americans With Disabilities Act-- in 2009, as I recall. So HR staff should be acting in accordance with this law. Maybe your particular HR Dept. needs to be politely reminded about it. Unfortunately, too many employers still take a cavalier attitude toward health insurance-switching due to their "bottom-line" concerns. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 2/16/2023 6:35 PM (GMT 0)
Thank you so much for your words of support! It's a mess. Someone is calling me this afternoon to fill me in on what is going on. My last Entyvio claim has been processing for 2 weeks and I'm terrified that it's not going to go through.

Meanwhile, we are without an HR department, so the CFO of the company has been the go-between and I've been very nervous about revealing too much while still trying to get my needs met.

I don't think anyone in the situation understands the level of healthcare that I need and it's very stressful.
Posted 2/17/2023 4:40 AM (GMT 0)
We are like diabetics, who can look perfectly healthy and function quite fine as long as they access the necessary med(s). It's just harder for us to get the med message across to outsiders because we don't want them to know we can suffer bowel urgency/incontinence without our med(s). / Old Hat
Posted 2/17/2023 2:02 PM (GMT 0)
I have learned the hard way. I wasn’t always this way and it has bitten me many times in my career. The people you work with are not your friends. They are co-workers. You can be friendly, of course, but you should keep all personal and family matters to yourself. As much as you can without being a jerk. If you cross the line, and become friends with them, as you would with someone outside of work, you are asking for trouble potentially, that could affect your job.

That being said, I am a Christian, so, this is where I will cross the line. If someone asks me about my faith. Then I will share with them about that.

It has been said, if Christianity were a crime, would the people at work be able to testify against you?
I try and live my life in a way, that the answer to this would be yes.

But that being said, I’m not walking around banging people over the head with it.

Back to the main topic…I would never share health issues in detail with any coworkers or bosses or HR. Never.

If you’ve already told people at work including bosses, I would start to downplay your illness as much as possible.
You do not want anyone there to think your work is being compromised in any way.

My two cents.

Post Edited (Rusty Barr) : 2/17/2023 6:06:52 AM (GMT-8)

Posted 2/17/2023 6:43 PM (GMT 0)
I guess it depends on the type of work you do and the type of colleagues you have. I have shared my diagnosis with a few that I trust, because I also need them to understand why (for example) I need to have the office closest to the toilets and why my productivity is less than a more able-bodied person. But, I'm in Europe so it's a different system.
Posted 2/17/2023 9:40 PM (GMT 0)
Thank you all so very much for sharing your perspective and wisdom. It's given me lots to think about this week. I will write more later but for now I wanted to let you know that I really appreciate it!
Posted 2/18/2023 4:26 AM (GMT 0)
I agree with Rusty.

A workplace can be a place with friendly coworkers....but....Some of those bosses or coworkers will utilize anything they can find to get ahead. Even if you tell a "really close friend" at work they might slip... and that info could have a negative impact on you.

It's come back to haunt me. I would not share again unless I absolutely had to... Ie; if I needed special accomodations for additional time off, scheduling, to sit closer to the bathroom or to be able to sip something at my desk. Then I'd apply to the HR department (so I'd have some protection because I could not meet the corporate policies regarding those items) but I'd know that workplace gossip would eventually reach bosses and coworkers.

I would go to the CFO and ask if there was any news regarding the insurance issue and if there was any way I could assist. If asked I would say the current insurance might be insufficient if something popped up in the future... And that you want to get it resolved asap.

Good luck.
Clo
Posted 2/18/2023 3:23 PM (GMT 0)
Amendment. I think it’s ok to say something like “ at times I struggle with IBS or an upset stomach more than an average person’, to justify an office move closer to the bathroom. But again, highly downplay it.
If you’re having a bad day at the office and someone asks you about it, I would say something like, yeah, I must’ve had something bad for dinner last night.

Again, I would never disclose IBD to anyone that is related to your job.

Today, a company’s insurance costs are outrageous. If they know you have IBD and they think you may be taking an outrageously expensive biologic. And then their insurance costs jump up crazy one year, you don’t want them thinking their costs rose so much because of YOU.

I’m telling you, they could rationalize getting rid of you because of these costs, no matter how much of a superstar you are at your job.

If they don’t know who’s taking what, they can’t start asking employees one by one about their medical history or what drugs they take. Then, they just have to eat the additional costs.
Posted 2/18/2023 8:10 PM (GMT 0)
I think you could say something vague like that you take a very expensive biologic/infusion medication for a chronic health condition and because of this, you're stressed and anxious this happened and wondering if there is anyway to expedite the process to getting it fixed. You don't need to get into details if you think it could be used against you. My boss knows but I work for the government and we have all kinds of protections and support and a union as well. Back when I worked in the private sector, my first boss knew as well but that's because I first got UC right after starting that job and I was extremely ill and unable to work for weeks so I had no choice but to explain what was going on. Luckily, I was not fired.
Posted 2/18/2023 9:37 PM (GMT 0)
The doctor who DXed my UC in 1980 advised me to "stay in a large insurance pool". AND, still safer to disclose the minimum needed in one's actual workplace, as Poopydoop describes, and avoid discussion of Rx infusions or anything complex that may sound like malignancy. Let them think you're diabetic or something more readily tolerated by the masses. However, an official HR Dept. needs to acknowledge the ADA Act and respect patient rights to accommodation and privacy. Hoping you get the necessary Entyvio insurance processing accomplished ASAP! Take care. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 2/18/2023 10:36 PM (GMT 0)
I'd try to research and offer to help the CFO without indicating my health issues or any medication I was on.

Health insurance companies base rates upon claims paid. If they pay more in a specific area they charge more. Our company..(which was very large,) when negotiating to renew insurance policies for our employees... We were told (and shown) insurance expenditures as a whole... Which justified increases.

Personally I would not feel comfortable having a company, my supervisors or my coworkers know that I was one of the reasons for the increase.

Clo

Post Edited (clo2014) : 2/18/2023 2:43:05 PM (GMT-8)

Posted 2/18/2023 10:47 PM (GMT 0)
Since I was hospitalized a couple times during the time I have been with my current employer they are well aware that I have UC. We are a large employer and self insure through United Healthcare, so HR is well aware of my infusions and is currently advocating for me so that I can stay at my current infusion center instead of being forced to go to an non-hospital affiliated infusion center. My boss has been great and has no problems with me adjusting my work hours every 4 weeks for my infusions (I work from home).

It really depends on your employer, your relationship with them, and the type of work you do as to how much you disclose. I am fortunate. Others not so much.
Posted 2/18/2023 10:51 PM (GMT 0)
Sorry but I never downplay my illness and pretend I have IBS. People might not need to know the details of my disease, but in my line of work it is better to have a registered sick leave and meet all work agreements than pretend to be fine and then be perceived as underperforming. IBS is also associated with various mental health conditions. If I tell people I have an autoimmune disease (without necessarily any other details) they understand that its a serious condition requiring serious medication.
Posted 2/22/2023 4:43 AM (GMT 0)
This is such a gray area.... so I didn't share unless I absolutely had to. I'm glad that others have had positive experiences.

For me.... I got so sick there was no hiding it... And even the ADA protections couldn't protect me. Too many hospitalizations and too much time off. It was just a matter of time before I fell into that "tipping point" and was let go. I knew that the management at my place of business was frequently in talks with our legal department on what they could and couldn't do....and the company had formulated several plans to help that person legally "move on" when the opportunity became available. Profit and loss.

Logically...if they can fire you and not have to provide your benefits..and they can hire a healthy person for less...well it's a win win for the company. I was just Thankful that I could take early retirement....but gosh it was a rough time. So I'm very cautious when it comes to this.

I guess it just comes down to knowing your work environment.

I hope this works out for you and they get this straightened out.

Clo
Posted 2/22/2023 9:27 AM (GMT 0)
I work in a non-commercial environment and am also in Europe so the protocol in my place is: you can take a (full time or part time) sick leave at full pay (provided you have a letter from your doctor and have been assessed by the company doctor) for up to 9 months consecutively. After that they start to cut your pay in increments. And after 2 years the company is allowed to terminate your contract.
Posted 2/22/2023 1:21 PM (GMT 0)
I work in Manhattan for a very big law firm. It's very stressful. I think half the lawyers have issues with their digestive systems. Anyway, my firm is very understanding. Since Covid, we are asked to come in three days a week, and two days from home. If I have any issues where I can't come in, they have no problem with me working from home.

If you have an HR department, I would disclose your situation. HR is supposed to be very discreet about issues that employees have.
Posted 2/22/2023 4:20 PM (GMT 0)
Poopydoop...Thats wonderful. The US has FMLA/ADA but there are so many loop holes.....individuals can sometimes have issues. I'm in the US and my company had a disability insurance program for up to 2 years which ran concurrently with the FMLA/ADA requirements (which had to be reevaluated yearly) It's a balancing act for the employee and the employer.

Michelejc... I laughed out loud at the beginning of your post because it was so spot on.

I wonder if things have changed because of COVID and the passing of time? It's been over 5 years for me since I "retired". My fistula was a game changer. I couldn't control it. Imagine being in a business meeting and having a fistula release waste--even with padding the smell was uncontrollable. The infections seemed constant. It was challenging.

I was an operations manager for a large global company. I had several departments I oversaw and one of them was a legal department. (That's why I laughed. So so true...)

Our HR department did not share health information regarding FMLA/ADA with our supervisors..unless it was required because of specific accomodations.. Just realize that if you are on a leave program your supervisors will check with HR and legal to ensure they are toeing the line. They will be watching themselves and you carefully to make sure the legalities are followed. If the company you work for is "watching their profit and losses" very carefully.... They will toe the line but look for ways to trim losses.

Logically we all know that some sickly employees costs companies more, they make scheduling a juggling act, productivity is less.......so working individuals with chronic health conditions need to read the fine print and be cognizant.... especially when companies are struggling financially.or the economy is bad. Be aware, be careful and try not to act paranoid.

I'm so glad I don't have to worry about that anymore.

Please let us know how it goes....
Clo
Posted 2/22/2023 4:47 PM (GMT 0)
clo2014: I think things have changed with regard to the work force since Covid. I can only speak for the company I work with. They are much more understanding to things and they do give a lot of leadway to the employees. But, they still won't tolerate employees that take advantage.

As far as FMLA, you are right. Only HR needs to know that unless you decide to tell someone else.
Posted 2/23/2023 11:46 AM (GMT 0)
Hi Everyone, Thanks for all of your great feedback. This thread sort of took off — which I didn’t expect!
Unfortunately, my early Feb Entyvio infusion was denied by insurance because my employer mistakenly changed my health insurance plan on Feb 1. My GI also wanted to increase my Entyvio infusions to every 6 weeks and that pre approval has not gone through either (that appt is mid-March so there’s still a bit of time to sort).
Right now I’m working directly with the hospital and my insurance to sort, while not sharing specifics information with HR.
It’s messy and stressful. And also incredibly disappointing — I was so hopeful that the Entyvio was going to start working at 6 weeks.
Thanks again!
Posted 2/26/2023 5:03 PM (GMT 0)
Have you contacted entyvio patient assistance for help while you’re waiting for insurance kerfluffle to be sorted out?
Posted 2/27/2023 12:54 AM (GMT 0)
ID,

Check with your company HR and see if the company will pay for your last infusion. They changed your insurance without prior notification or authorization so they may be willing to negotiate the amount with the pharmacy/infusion and pay it out of their business account. Just a thought.

FG... I don't think the payment assistance is retro active. It's only applicable once your accepted. That's the way Remicade was.... I got stuck with some hefty bills because of that.

Clo

Post Edited (clo2014) : 2/26/2023 4:57:02 PM (GMT-8)

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