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Should you / have you told your co-workers you have CML?

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I've was diagnosed 9 months ago, and I've only told a few people who need to know at work. I've not had any significant time off work, and as far as they're concerned, there's no difference in how I am.

Is there anything to be gained from letting others know? While I want them to be understanding, and I feel like I'm somehow not being "truthful", I don't particularly want to be treated differently, asked awkward questions at inopportune moments, or be known as the "colleague with cancer".

I was just wondering what others have done. Did you tell some people, or everybody, or avoid telling people at all, and why?

Thanks!

Except my family and two of my best friends nobody else knows about it... The reason is because people does not know that cml can not kill you and you can live a normal life! I do not want feel sorry for me!!

Good question,

When diagnosed I was very ill and I didn’t take my cancer diagnosis well. I told my boss and with my permission he told all my colleagues. I wasn't ashamed of it. I had initially 2 months off of work and that’s the max my employer would pay while I’d be off sick. I returned to work hesitantly because I was very fragile mentally, physically and emotionally.

Luckily I work from home a lot (I am programmer) and the office has a work from home policy. I went in to the office (London commute) a few days a week and worked from home the rest. Currently due to COVID no one is returning to the office until at least 2021 and even then it could become permanent.

While in the office I did feel like the elephant in the room, and people where kinda awkward at times as was I. Because I looked so well after commencing treatment a few months in I felt paranoid that people thought I was lying about my diagnosis (who would lie about that and funny enough I had to do a fit to return to work interview with an external company who told me many people fake their illnesses).

If I were to start another job I don’t think I’d tell anyone unless I became ill again because it caused a lot of paranoia and awkwardness. It is  nothing to be ashamed of but at the same time you want to continue life as normal as possible. It took me many months to digest or read anything about my illness all I heard was I had cancer and I was going to die. Slowly after things got more normal I read more and talked more and I’ve learned to cope with uncertainty. Yes for the most part this is a chronic illness but the problem I find is you never really will know what camp you are in until many years after diagnosis to have the confidence to say I am gonna make it. I still don’t at times believe it’s possible and part of that is accepting yes we have a deadly cancer but it’s as much about accepting we have amazing medication to beat it. Again the vast majority do but some don’t.

Sorry for the ramble I go on far too much.

Alex

 

Hi Philmc,

I am in the 6th month of treatment. Due to the lockdown-covid we were quite isolated. My family, a few friends and my boss know about my condition. I do not think it is necessary for everyone to know.

Faidra

I will rejoin snowman 35, I was diagnosed and I didn't tell anyone basically. Except for my dentist and from now on I'll make sure that only the treating professional knows and not the entire office. I experienced the weird looks from the assistants and dental technicians last time and you realize why you should carefully pick who you share this news with. Even love interests. I'm not ashamed of it, but I question what I would gain from it. Support? I think coming from healthy people it would probably be shallow and empty words, and sincerely I don't fault them for it, I've seen people become sick and die and it didn't affect me greatly. Circle of life as they say.Telling my mother would worry her sick, or kill her. Plus I enjoy having normal relationships with people and no weird reactions, no sad looks just like before my diagnosis, I can pass for a healthy 30 something dude with youth energy and a bright future, Why would I pass on that. Unless I have to, I get extra sick or I need to divulge it, I won't. I feel like blade creature of the night that can walk in the light hahaha I'm a daywalkwer.

Hi everyone

 

I tend to wear my heart on my sleeve and have told everyone at work, in the family and all my friends.  Basically everyone who knows me, even as a passing acquaintance, knows about my condition.  There are pros and cons to this.  The pros are that people are kind and caring, they ask how I am regularly and offer me support and comfort.  The cons are that I am often reminded of how sick I am and that I am "different" to others.  While the support might seem shallow and empty, I don't think that it is - people just don't know how to cope with someone living with cancer.  Sadly nobody can ever truly know how it feels to have this condition, not even other cancer sufferers, since the treatment is so different and so lifelong.  

 

For example, many people are WAY more sick than the majority of us are (as I've seen regularly when I visit the doctor and see patients being treated for conditions like non-Hodgkins lymphoma, aplastic anaemia, etc).  But sometimes these people make a recovery and can go off treatment (e.g. when the cycles of R-CHOP therapy end for lymphoma, patients can go treatment-free for a long time).  Ours is lifelong, remission is measured in different ways and people don't understand it at all.

 

Two things I personally battle with are when someone says "My uncle had leukaemia" and then proceed to tell a story about how terrible it was for said uncle, not understanding that the uncle had AML given the symptoms and treatment they describe.  People generally think that there is only one kind of leukaemia and everyone knows someone who had it.  This isn't their fault is this is a one in 100 000 condition, so they can't be blamed!

 

The other thing I find really hard is when someone tells me how "brave" I am.  I'm not brave.  Bravery means choosing to face something scary and life-threatening head-on and attacking it, like leading troops into battle or cage diving with sharks.  If I had the choice I would run 10 000 miles away from this leukaemia!  I would not tackle it head-on at all, but flee it at all costs!  All I'm doing is making the best of a bad situation, and that's definitely not bravery.

 

In conclusion, I guess we are all so different and we will approach this condition in very different ways.  I don't regret for a second telling everyone about the cancer, but I sometimes wish I could go somewhere where nobody knows this about me, just for a break.  The trouble is that the tablets are a daily reminder.

 

Best wishes from South Africa

 

Martin

Hi Martin,

I think it all comes down to personality. I'm very private, you can even say closed off. I find questions about certain aspects of my life very intrusive, specially coming from people that I'm not close to. I was working two weeks ago, and a colleague that I just met told me about his prostate cancer and how his treatment went and everything. He probably likes the act of sharing it with strangers and gets something out of it. I don't get it, but I respect it, so I guess I'm different. Quite frankly apart from the loss of control that I experienced having to deal with doctors for the rest of my life and accepting the side effects of TKI, I have coped very well. It just doesn't bring me much to talk about it with people that might not understand, or relate. I think the answer to the question has to take into account of the personality of the CMLer. Starting every conversation with someone talking about my condition would be enraging even if it was a "how are you feeling?". If it fills you with a fuzzy feeling I think telling people is probably good for you. Again personality.

Take care!

Martin, that is spot-on and pretty much describes my situation too. Everyone in my workplace knows my situation, and I find that helps because people then tend to be more accommodating when I need them to be. That said, the people I work with are a very nice and empathetic bunch despite the reputation that my line of work has! I might not be so open in another environment.

David.

Well said Martin spot on!!

There is no one answer.  While we prefer to be perfectly honest with everyone - CML is an unusual cancer, my Oncologist said it well, If you are going to have cancer, this is the one to get because there is a good (not perfect) solution with all of the TKI drugs available.  When I visit my Oncologist, I realize that I am one of the luckiest ones in the waiting room - my life expectancy is not going to be affected and I can continue to enjoy my family.  

I retired almost three years ago.  I am 67 years old and I was a CPA in private practice in the USA. While working, there were very few of my clients that I would share my diagnosis with as I could not show any weakness.  My largest client who paid me over $100,000 per year told me that after 35 years that he was considering changing accountants because he thought that I was not as focused as I used to be.  I immediately sold my accounting practice and was paid for the value of his business and some other business that I was going to lose for no fault of my own.  Smartest move that I ever made.  I told my clients that I had CML and it was part of my decision. 

In all honesty, the year before my diagnosis, I started having significant fatigue.  The first tax season when I was on 100 mg of Sprycel the side effects were significant and I had a weird eye problem that I couldn't focus while reading with both of my eyes open - I had to close one.  that resolved when I reduced my dose. 

As pissed off I was that my long term client was ready to leave me, he forced me to do the right thing and get paid for selling my business as opposed to continue to work, lose clients and lose the value of my business.

  

Thanks all for your replies. Your experiences certainly resonate with the kinds of interactions I've had so far.

I've decided not to share it more widely beyond those that need to know. I'm not ashamed either, but I've found that many people just don't know how to respond or what to say, when I don't want or need them to say anything, and it just gets awkward. I think that all in all I'd prefer to get on with life as normally as possible.

Now this is a very interesting thread, and I can relate to many answers, both pro and against telling co-workers.

If I may share my two cents:

I am a telecom software engineer. I learnt about my condition the same day that I arranged a routine business trip, which I obviously had to cancel. My boss and two of my closest colleagues learnt what's happening from day one. I literally went to my office to tell them, in between two hospitals, while searching for an haematologist.

In the course of the next 3 months, I only missed work for 2 days: the day of the diagnosis, and the day of my biopsy. The rest of my teammates initially learnt that I'm dealing with a blood issue, a "bad gene", a potentially fatal illness (if you don't discover it), which is treatable with a pill. No one heard the word leukemia, and no one freaked out. They basically knew exactly what was going on, without the scary name.

In the course of these 3 months, one by one also learnt the scary word as well, in due time. Only my team and not the whole company, but that's enough people. No one flinched. They already knew my treatment is working, and they also saw me busting my a** at work, being at my best, without missing a day (hello, my name is workaholic, nice to meet you! cheeky ). They didn't have to think twice, whether they should change the way they treat me.

I think that's what made the difference. Everyone knew, but they didn't realize. They learnt the scary name, at the exact time they were ready to hear it.

 

PS: My boss knowing the exact situation is a blessing. It really helps a lot with appointments and tests, because they are almost always within working hours, and I am fully excused to miss a couple of hours of work. Plus, they value twice the work I do.

PS2: Forget about co-workers. What do you do with dating? Do you tell? I would say, definitely not at the beginning. I have to admit that I'm 16 months into treatment, single, and haven't dated anyone since diagnosis - at the beginning because I didn't feel like it, and then because of COVID. But those are excuses. I'm definitely rusty!!!