Trying to explain to co workers and friends what im going through but it is failing it seems at times.
How to make friends and co workers understand what you are going through? This has been a journey for me as well.
Kollock, if you will lock your post (hit "more v" at bottom of your post and edit by choosing
" this community", then give some idea of what your employment situation is--
Are you in a company that has a Human Resource officer?
Do you have insurance coverage?
Where are you in the world?
Do you see a hematologist/oncologist? and do you have a regular General Practitioner/Primary Care Dr. with whom you can explore other possible reasons for your thirst (could be diabetes related) your fatigue (could be diabetes or thyroid related) your feet pain could be diabetes related).
All those answers can help others to relate to your situation of needing to work so many hours and help to see what is a good possible solution they have found helpful in dealing with job and CLL and treatment and possible other health situations.
Yes to all of the things you ask, ive a diabetic now for two yrs..and with those meds plus my oral chemo is becoming taxing on my body and mind..I just want to fall out. ive taken almost a week off of work even though I have three days off
You’re on Ibrutinib so your CLL was obviously well advanced enough for you to need treatment. It’s a sad truth that if you were receiving your daily treatment though an infusion you pulled along on a stand, your colleagues would readily understand and support you. The fact that you’re receiving the equivalent orally doesn’t means you require less support and understanding. Tell them you’re receiving chemo orally and it’s hard on your body. You’re working in the heat, clearly not taking on enough fluids and not getting enough breaks. Of course you’re thirsty and your feet hurt (but also check out your glucose levels as Cllady has suggested).
In the UK you’d be protected by the Equality Act and entitled to ‘reasonable adjustments’ which doesn’t mean unfair privileges, it just means fair access to conditions which enable you to give your best without compromising your health.
What to tell your colleagues? Tell them you’re fighting a battle with blood cancer and some days it’s harder than others. Tell them you appreciate their support but just as you’d be there for them during tough times, you’d appreciate it if they did the same for you.
Don’t compromise your health. I’m on Ibrutinib and I’d struggle to do your job so you’re doing great but can’t be expected to be 100% and your employers and colleagues need to recognise that.
In a word: impossible.
Re fatigue I try and tell them it’s a bit like having flu every day but they don’t get it. Nobody gets it. Expect other people who have it.
Maybe accepting they won’t understand because they can’t walk in your shoes is the first step to a better more harmonious life. I wish I could have taught myself that right at the befinning....
Well said! Half the time I feel like I don’t even get it! Energy one day, none the next!🥺my mom keeps saying, “your cancers fine” 😂 lol.
I agree with Adrian 100%! He really is spot-on.
You can try and try - but it depends a lot on the individuals you communicate this to. Chances are, unless they’ve dealt with it, they don’t and won’t understand it.
But don’t feel bad about it. This is just human nature. Frankly I find it easier not to mention CLL to “outsiders “ very much. It becomes a weary task to explain the whole thing to people.
Perhas its worth a try to close friends, but please donn’t be upset if they don’t understand. They are still close friends. Good Luck.
I'm kind of with you...I've been diagnosed almost 6 years now and on imbruvica 3 plus years...I've probably only shared my condition with 2 dozen people...some family doesn't even know. I'm retired so the co worker issue isn't a factor and I'm lucky I've not experiencd the debilitating fatigue.
I am finding that many people expect that you will go on chemo right away and then loose your hair and a bunch of weight. If those expectations aren’t met, they get confused and think you might be gas lighting them.
I have lost at least one “ friend” who thinks I am lying about the whole thing!
Since then I find it easier not to mention it.
However, since I actually started treatment, people seem to be more concerned with how I am feeling. It like it fits their scenario better. So weird!
For those not yet to the stage of disclosing their status to work colleagues and even to extended family members ... it is time well spent to consider carefully the voices of those in this CLL/HU community who have indicated that after making their disclosures they regretted the action since it merely added to their burden.
In my case it was the opposite. My friends have been great and my colleagues better. Everyone stays well clear of me if they have a cold, and very very few of them ever mention it but if I don't feel up to doing something I don't have to make excuses.
I agree. Consider it beforehand.
I’ve been told I’ve got “a chronic condition so what am I worried about”, & “ you’ve seen most of the world, so you’re not really missing out,” - so that alright then..........words fail - & that was from someone I’ve known all my adult life.
It's true that no one really 'gets' what we go through. No one.
So you keep it in mind. I've stopped trying to explain how I feel. Instead I just say, "if you get a cold it's a week. If I get the same cold it's six weeks. The last time I got a cold I ended up in hospital." (Which usually elicits a "Shit, or OMG") "I'm fifty but some days I feel like I'm seventy, and others I feel like I'm forty, " (Which is something a lot of them can relate to too).
I never worried too much about losing friends over it, cos if they don't have the emotional intelligence to deal with someone close having cll then I don't want them as a friend anyway. An acquaintance maybe but not a friend.
Work, I was worried about work, but there are only so many weeks in hospital, blood tests and appointment with the doctor that you explain away... It was a relief to tell the boss what was going on.
I didn't tell anyone except those on a need to know basis. Still haven't shared to the public. To me it's a private matter. When or if it gets to where I can't keep it private then it will be another discussion.
I know you are saying "why". Well heres my logic. I refuse to let this damn disease define who I am as a person. I have CLL/SLL I do not have "cancer". I am receiving treatments or therapies not "chemo". I only use positive words and never want someone to say "I'm sorry". I don't want pity. I am the same person I was before this and I want to be treated the same. I don't want whispers and gossip so I keep it to myself.
My personal thoughts. And as an FYI I just finished 6 months of B+R and never told a soul. They didn't even know.
I wish you well on your journey.
After a week of being so exhausted that I am struggling not to fall back to sleep an hour after getting up in the morning, and no matter how many times this week I have explained to family, colleagues and friends that I am too exhausted to cope with their demands, they persist. I frequently explain that I am receiving treatment (Ibrutinib) and though I may seem & look (the wonders of make-up!) all right a lot of the time, I actually achieve this by leading a quite restrictive life for a 55 year old.
The lack of understanding can be quite incredible, I have had a sibling actually say to me "Your are lucky in one sense as at least you have a diagnosis"! I have been living with CLL since the age of 42, and in that time I have had friends from the medical profession dismiss any concerns saying that I won't need treatment?
What I’ve learned over the past 7 yrs + since diagnosis is people don’t really express disregard at my condition. What they do demonstrate is fear because I hold up a mirror to allow them to gaze on something they’re afraid of getting themselves.
I didn’t widely disclose and still don’t do this publicly so I realise I haven’t given people a way to engage with me comfortably. This is an example. Recently, I was out socially and approached a table of females I’ve known for decades to speak to a friend there. I’ve never discussed my CLL with them but I know they will have been told. Normally, they’d have greeted me warmly but on this occasion I realised they all became suddenly ‘busy’ and distracted when I approached. They didn’t know what to say or whether to say it. What they really want to know is my prognosis because it’s human nature to want to assess risk.
So they took their lead from my appearance and like a well presented house with crumbling foundations, I looked sound so it was ok to ignore my reality. That’s how people cope. Cancer terrifies them and ours baffles them because it’s unpredictable and isn’t visible enough. Where’s the hair loss, the weight loss, the scars? Where’s the outward signs of suffering they can identify with?
Interestingly, when I have bruising and extensive petechiae, people comment and sympathise but in terms of symptoms, they are actually the least of my worries.
Some people will not actually care especially if it inconveniences them but for the most part, it’s fear and self protection that is the barrier. They want to treat us normally because that way they don’t need to address or feel discomfort with our reality.
For those reasons I make allowances and I reflect on how I probably reacted similarly in the past. However, a work situation is different and formal survival strategies kick in so I’d be insisting on adjustments in that case whether they understood or not!
You're so right in your observations. Since I knew what people were like when I got migraines, friends/acquaintances, neighbors, I decided early on that I wouldn't tell any of them about my having cancer. No one knows except 3 people in my immediate family. When I was in the hospital for pneumonia, well, that was pneumonia and I never mentioned CLL, when I'm very tired and feeling bad, I say it must be allergies.
My wife did not lose her hair with the medication for her CLL and she did not loose weight or her skin turn cancer gray. Hence they say to her you look so good. Hence no sympathy. She hates being told she looks so good when she feels so rotten. Therefore they believed she does not have a blood cancer or is exaggerated her cancer condition and is lazy not fatigued.
I think people get confused by CLL and look for subtle signals before their empathy kicks in. Then for some it is difficult to sustain empathy at an intense level where they lose empathy as a coping mechanism.
I know what you mean. I haven't had to work and I'm glad of that because the people at work didn't understand migraines and I got those every month of my life and they lasted at least 2 days. I needed two injections at the ER or from an Immediate Care Clinic to get rid of the pain. When I'd get back to work most would say, oh, I have headaches too but I come to work when I have them. So, I imagine what people must think when you say you have CLL but aren't getting infusions and take pills every day for it. It's a shame but a lot of people don't have much in the way of understanding for others anymore.
I was very careful about telling friends and colleagues about my diagnosis. For a very long time, I told only my very closest friends and family. And now, more than 20 years from diagnosis, not many people know. Of course if you need time off work, you need to be able to say why, at least to those in charge of such things. But if you are functioning well, perhaps you should be more reticent. It seemed to me that there was no benefit in people treating me as if I were a sick person -- fastest way to turn me into a sick person!
By very nature, my work entails dealing with all sorts of infections. , After one year for this and a number of other reasons, I decided to tell people. I knew that once it was ‘out’ to just a few, it would soon do the rounds so, after family and close friends I told everybody at once. For me it worked. My colleagues are understanding and because it’s not a secret and I welcome questions, it’s not a big thing. It gives me the option to retreat if the risk is too great and has made things easier all round. After appointments they ask how I am and that’s about it. BUT I appreciate that I have been lucky and realise that this is not always the case. There are so very many factors involved in whether to tell, worry to children and other dependents etc.... For me, it made work easier but of course it may not for some.
Unless they’ve been in your shoes they won’t understand l always tell everyone I need their prayers. I don’t sweat it so I don’t want you to either( friends ,family) and you can always send them here or any other site that might be able to enlighten the non-cller most important is that you get a good grip on your cll and kick it’s butt!! Truly most important is you my compadre! Good luck and keep the faith
Im trying..as soon as I think I have it..it changes on me.
I know but you are bigger better and stronger than any CLL could ever be!! Don’t forget it and you must live it!
Apparently 1 in 4 people will get cancer but it is still somewhat taboo due to the fear factor. I'm a private person..9 years CLL. Told almost no one except siblings and spouse. As to work I told my partner and boss I have a medical condition. Did worry about lymph notes in neck showing but got treated by ibrutinib and they dissapeared.
Having an invisible disease has reminded us that most people are dealing with something you don’t know about. We’ve taken it more the other way to be more compassionate to others vs expecting people to understand what we are dealing with. Like others we’ve kept it very private personally and professionally (the joy of CLL at 41).
This oncology nurse has a different kind of cancer (not blood) but her explanation of how she "didn't get it" until diagnosed herself has been very helpful to my family. I also just shared it with a friend whose brother was diagnosed with NHL last week and she found it very helpful in learning what he's going through and how to deal with his feelings.
A few more suggestions. Do you have a support group anywhere nearby? If you can find the energy, this might be a place to be who you are and also find advice for coping in the work force.
The other thing that helped me was to talk to my Leukemia & Lymphoma Society social worker from time to time to get perspective on my feelings.
After almost 10 years (3 relapses, 5 treatment including a BMT) of dealing with all this, I found accepting I have cancer and that it’s part of my life made it easier to own and discuss with others. Of course each to their own, but it takes precious energy to deny one’s own truth and I believe tends to work against you by invalidating your own experience and feelings. In addition, you tend not be as kind to yourself as you could because you are trying not to be a person who has cancer,
As a psychotherapist I have had the honour to lead groups for both survivors & individuals with no treatment options left to them. The first words I ever say about the usefulness of a support group is to have your feelings and experiences validated by others - it’s a bit of a club, and those who have never had it cant quite understand the experience in its entirety,
Perhaps this article I wrote for the CLL Society trying to explain some of these feelings may help you, but one thing I can say for sure is your experience is common amongst the diagnosed...
Take good care.
Thank you I am feeling so much better about things at the moment!
Ok, the cat is out of the bag, so not telling others is not an option for you. I told people early on, and have not had issues. But I am retired, so the work place issue is not a problem for me. I do have the issue of looking “healthy”. When I have bad bruises or petechiae, I don’t worry about every single spot being covered. My close friends know that I cannot always be counted on to be “dependable” for appointments, meetings, etc. If I am having a bad day, I tell them I am having a bad day.
The more honest you are with people, the more they will “understand” what “your” cancer means to you and how it affects you. I have a friend with breast cancer who was treated and cured within a year. That’s what people don’t understand. I tell people there is no cure for CLL and even though it is a “chronic” condition, that does not mean we don’t have acute symptoms at times or treatment related issues. I tell them why I can’t keep the babies in the church nursery like I did for 30 years, why I can’t do rank and file hospital visits, or keep my sick grandkids, etc.
Education is key. The more those of us with CLL explain to people, the sooner everyone will know as much about CLL as they do about breast cancer.
Diabetes is also chronic and people die from diabetes complications all the time, but people don’t ignore your diabetes diagnosis if you choose to tell them. In fact many times, they are “overly” helpful, trying to tell you what you should or should’t eat, etc. When people tell me I look great, I say thanks, but if I don’t feel great, I tell them. People will be people, your true friends will understand and learn to cope. If they don’t they are not true friends. Harsh, but true. Hope things improve at work.
Thank you so much for /your response,,Im going to more honest about how I feel without feeling im burderning ppl. Work in progress!
One of my closer friends that I told still doesn't get it. She sneezes or coughs in front of me and claims allergies and says 'don't worry I don't have a cold'. Well I do worry because of germs, not just viruses. I have low WBC, low neutrophils, low IgA and low IgG so aerosolized germs in coughs or sneezes scare me.
I must be a bit nontypical. I probably tell too many people who are acquaintances or people I interact with - I want them to know I am not lazy just preserving my energy. For example, where I volunteer the car park is a walk away. Coming downhill from there is fine. If I have to walk back uphill I panic wondering if I will make it so try and take the buggy. I told close family but tend to avoid reminding them as I don't want to worry them. Hubby knows, but I don't think he realises how some things take it out of me. We have a nice thick mattress on the bed. Changing the bedclothes is sometimes a battle!
Having an illness where you look fairly normal can be somewhat trying.