Dealing with people not believing you're sick

I'm older than you (49) but as you know the adult chemo room can look like a geriatric center at times. I have only seen a few women in their 40's. Most are older and I have yet to see someone in their 30's. I can only images how strange that is for you.

Yes I look(ed) pretty healthy going though this. My onc would say to me how great I look. I actually do look good even though I'm wearing a scarf. I just had my final (6th) chemo Tuesday and nuelasta today. I feel like crap but I look great. I even went to my dermatologist appointment.

So the issue is that if you look good and healthy no one will think you are ill. I don't think these volunteers mean to be dismissing you. It's just that you look good, still have your hair and of course being younger makes you look even healthier. Take it as a compliment. Also volunteers are unpaid so sorry to say you might have to lower your expectations a bit.

But it they don't believe you then I would ask them if they need to see your scar in order to get treatment/help.  

You don't have to look sick on chemo nor should you. I put on make up everyday. Wore great big earrings with these awesome scarves and walked tall. You will feel better if you do that. You really don't want to walk by a mirror and see yourself look like crap. Be proud you look good… even if you feel like crap.

(I never liked my wig. It's too shiny and not as comfortable as the scarves. My picture is me in my wig a few weeks after my 4th tx. As you can see I don't look sick at all nor do I look geriatric!)

Hugs to you.  Sorry you're having to deal with stupidity. Maybe a quiet mention to your oncologist so the volunteers can be counselled before they do this to someone else also?

I'm so sorry to hear that the people in the help centre made you feel worse!  But you know they do get people walking in who are there for a loved one.  And if they are older, that "suspicious look" may have been nearsightedness.   

When my emotions were raw (like they were when I was in active treatment) sometimes there wasn't anything that someone could say that would be ok...

You look great!--not acknowledging my CA patient status.  I'm being ignored.  Or lying to me, since I don't think I look good.

Offering me help.--insulting me!  Do I look like I need help?

Not offering me help.--ignoring me!  Why won't they help me?  Aren't I as entitled as any other cancer patient?

You'll be fine.--How can they know?  I'm getting toxic treatments that are dangerous enough that the staff is using barrier methods to protect themselves from it, so I may not be fine at all.

Nothing anyone said was ok.  It made it really hard.  There are a number of threads here with titles like "can you believe what they said."  Reading those (even if you don't participate) can help a lot.  Some of them are so awful that I was able to let the things said to me go...

At any rate, maybe the help centre people were simply trying to find out what resources they should offer you?  For instance, since you're the patient, they wouldn't want to offer you brouchures intended for caregivers.  But perhaps caregivers come into the help centre looking for exactly those resources you don't want/need.  Perhaps the volunteers were simply trying to assess how they could help.

Of course, you can't know what they're thinking, so proceed as if they're there just to help you!  (Who knows?  Perhaps the volunteers are?)  At any rate, people will tend to respond to you in the way that your actions/behaviour lead them to believe they should.

 Expect help, and you'll probably get it.  If you don't get it, ask for it.  If you still don't get it, complain! 

HTH,

LisaAlissa

Oh man did I deal with that - even when I was bald and looked like hell and I was 46 years old. Even my husband always acted like I would be fine. It was so hard to be going through a personal hell and have people think you were milking it and making a big deal out of nothing. I actually got written up at work for taking off too much time going thru chemo and radiation. I don't have any advice - keep fighting for yourself and take all the time you need to recover. No matter what anyone else says it is a huge deal and changes your life forever........,

I don't think anyone can really understand breast cancer, chemo, surgery, radiation or any life threatening disease until they experience it. I had no idea how much this sucked until I became a MOTC (member of the club)

I understand where you are coming from.  I'm 27 and have always looked young for my age (pre-chemo I still got carded for buying spray paint and that is an 18 limit).  It is hard that doctors and staff don't know what to do with us young ladies (especially when we are not BRCA+) let alone volunteers, other patients, friends, and family.  During chemo I would have a really bad week where I didn't see anybody, a not so great week where others very close to me did visit, and a really good week where I would go out and about.  I think that "good week" sometimes gave others a false sense of how I was handling the chemo.  I must say I probably didn't help much because when asked how it is going I always cheerily said pretty good regardless of how I was feeling.  I am finished with chemo now, but still feel the side effects, and definitely don't have the boundless energy I had before.  I have finally realized that no one knows exactly how you feel but you.  You need to decide when you are feeling okay and can do more, and when you need to slow down.  Good luck!

Since I was diagnosed I am pretty much suspicious of every comment.  I think people believe you want to hear that you look good and don't look "sick" .  My max fav comment after chemo ended was "well now you're done", "why do you need surgery".  I just think they don't know what to say and are scared of us. 

NO ONE should be documented or written up at work for cancer treatments.  That is disgusting and inhumane.  You know Karma is real and that supervisor that did this is nuts.  It makes me want to punch her in the throat.

I told my principal and asst principal how much I appreciated the way they treated me during chemo.  The ap's response was "Who knows I might be in your shoes one day".  Made my day.

libray lil

Tundra,

When I first started chemo,  alot of people said things like " Oh you will be fine. I had a freind who took chemo and never got sick or lost their hair so you will be fine cause you're young ( I was 43). It woulda been ok if they said "I hope you have it as good as my friend did".  One day I decided to try to go in at my hubbys shop to answer the phones etc. There were 3 customers who told me that I was just going to have to start coming in more cause my hubby was stopping alot to answer the phones. When I told them we had hired another employee to help..they told me that I was half owner and that I should do half the work.  I was just about to "blow my stack" when in comes a female customer who normally makes it her quest  to try to piss me off. That woman walked over to my desk and said..and I quote " Anna, You look like shit, your hair is a mess, you need makeup, you need to start getting your ass in to work like your hubby does cause he is working way too hard doing "your" job.".....I thanked her for sharing her thoughts with me, called my daughter to come get me and then turned to that piece of crap woman and informed her that my hair was in the trash can and I was wearing a wig , I didnt feel like puttin on makeup, and yes I not only looked like shit but I felt like a pile of it and that she better get used to my hubby being busy cause I was never coming back in. These people were not joking around at all..they were seriously scolding me. Sorry for rambling on your post, but I wanted to share this with you. Some people just dont get it and they probly never will.  After awhile when people would say those things to me, in a very kind voice, I'd tell them I was much more sorry I had cancer than they were that I wasnt working at the shop. That worked everytime in shutting them up and it made them feel like shit too LOLOL. They acted like I should just be doing what I normally did and that I should buck up and go to work when I was barely able to walk. I looked horrible Tundra. I looked like a cancer patient without a doubt and they still implied that I wasnt that sick. Its not that you dont look sick enough. Its just stupid people who have been lucky enough to not know what you feel like. You have this site full of ladies and some men who know exactly how you feel and you can turn to us whenever you need to. I come to vent quite often LOL. You are not alone !!! Hugs, Mazy

Mazy that is so AWFUL!!!

I am still getting crap from my SIL because I had both breast removed and only one had cancer in it. Even though I showed her the path report of the breast without cancer showing it was full of calcifications, cysts and Atypical cells. She has a lump in her breast that she won't have biopsied , she's just having it watched, which is her call no big deal to me. She brought it up again at dinner one night that she thought I was too radical with my treatment. She then said she was skipping a biopsy again because the lump in her breast only grew a tiny bit since her last mammo. She said they were still going to wait and watch. I was so annoyed with her I shot back why are you going to watch it, does it do tricks? I know I know it was bad but I have had enough LOL.

For sure...my husband AND his mother refuse to aknowledge that my illness is serious since I really have been lucky so far...I'm on doxil now which has let me keep my hair and I really don't feel too bad most of the time. But we all know how fast this can take a bad turn and things go downhill very quickly.  My MIL has made comments like "Oh you really look sick" (sarcastically) and complains that her other son's partner who has asthma and joint problems can't go down the stairs to do laundry. I do it but her poor son has to bring the full basket back up, and she knows that, so I feel like the comment is directed at me. She also has mentioned to me how my husband has to "pussyfoot" around the house so I can sleep. I put on a good face when I am around her so she figures I'm OK. Can't win. Meanwhile my husband has not much interest in spending time with me. So how is it going to be when I really AM sick? I guess I hijacked your comment, but I think all of us know exactly how we all feel...many times ignored, often not believed. People will tell you you look great because they think it's what you want to hear. Just chalk it up to ignorance. Then again, some poeple are just inherently mean.

P.S. Lago - Looking forward to getting back in the saddle again real soon and purchasing another bike (lost my 2nd one in my divorce)....hard to keep "onetoughwoman" down!!!  :-) ((((hugs))))

Dear Thundra,

you will get used to it, i actually think it is quite funny now, every time i went for echo the technician would come out and ask my dh was he next, he started to get insulted towards the end, as i had one once a month on treatment. i was sitting at a table with two old women another day and one asked me to get water for her, i was all hooked up to my posion wearing scarf on my head and then the other asked me to fetch her cardigan as she was cold, i had to plug out the monitor and iv line to get it and put it on her. another day a good friend asked me how long was i finished treatment with now was it a year or two and i was only in the middle of it. Even my mother asked me one day to make a bit of lunch and tea for my twin as she was wrecked (she was pregnant not sick), i had no hair, mouth sores, heals falling off me, constant gallbladder pain, joint pain, lymphedema, severe night sweats to the point i could not sleep, strep throat and chronic sinusitis, but apparently looked fine.

try to look on it as a compliment that despite all the s**t that you are going through you can still smile and look well. but remember to take as much help as is offered as that is where i made my mistake by always saying no its fine i will get dinner or do the shopping, clean the hse etc. at the start i was left to it and you do get more wrecked as time goes on.