How Do You (or Would You) Deal With Family Members Etc.

[ajw4790]

Hi all,

Not sure my title really portrays what I am wondering? Wasn't sure how to word my question. But, recently someone that married into my immediate family (sorry, trying to be a little vague for their privacy etc.) has been diagnosed with cancer. Thankfully it was found early, removed, and they are undergoing radiation treatments. Thankfully, testing showed that it had not spread. So, although cancer is a very awful unimaginable thing to go through, it seems at least that due to early detection etc. it is just about the "best" case possible (if there is such a thing).

So, although this person is not related by blood, they are part of the family, and means a lot to someone in my family, I care greatly that they get the best treatment and are in remission soon. My point is they are not blood, but I realize they may as well be. And that this bond forms thoughts, feelings, emotions, etc. from my other family members. My parents overall are understanding of me and my medical issues, but as it turns out my sibling and significant other that have been affected by this have not been understanding at all of me and my medical issues. Before when one of them had scoliosis surgery, they were very much to understanding to me, and thought of it as the surgery was the only actual medical issue. So, this is not the first thing to come up between us, and add to the animosity. Also, it may help to add that my sibling and I do not get along at all for whatever reason, so this really just adds to an already uncomfortable situation.

My question is how do I deal with things between my parents and I, as well as my sibling/significant other and I?

I totally 100% understand that cancer is an entirely different animal of medical issues. Biggest difference being mortality, an so many other things that come along with it. Remission, checkups, fear of reoccurrence, side effects of treatment etc.

But, I can feel the animosity, glaring looks, etc. as to why this person with CANCER can still work, but I can not. And why they can still do so many other things, but I need help. And the attitude of well, they have cancer, how dare you express any medical issue, because that is nothing.

Does that make any sense?

How do you deal with people in your life that also have serious medical issues themselves. I don't want to minimize what they are going through at all. I am just not sure how to make it clear to others that they are two different circumstances, and that everyone has their own abilities/disabilities????

Any input? Hope I made at least some sense. If you or someone close to you has had cancer I hope you do not get offended by anything I said. I do not think my experiences are equal or worse than cancer, they are entirely different from cancer.

Thanks!

[ladyt]

hi...

I know very well what u mean i think. i whis my brainfog was not so heavy, becaus your post toches on some of the things about illnes i have been strugling and goin trhou a prosses whit.

And yes there are very much difrenses between illnesses and other types of dissabilitys. People can be facing death, and still being heatly in away. And then one can be severly disabeled and not dying.

I also wish my first laung was english today. I am strugling to find the words and sentences to use..

i will try later.. but u are not alone.. importan subject

[Elenapap11]

AJW in my opinion it is unfair to you to be compared with a patient who's dealing with cancer.We all have a right to express our frustration no matter how serious our problem is.If i were you i wouldn't talk about my problem in front of people who compare my situation with somebody else's.I have POTS and all sort of things going on but my parents never stopped listening to my sister's problems just because they weren't as serious.Our family is there to support and listen to us.If for whatever reason they are unable to do so we should seek support from someone else.As for the working issue in all medical conditions there are people who go to work and others who can't.If your relative goes to work it means that he is not as bad as other cancer patients who are forced to quit their job.The same goes for Dysautonomia patients.Some of us can go to work and some can't.Noone should be the judge of how sick we are.They are not in our bodies.

Being in a family of three children i know that when one sibling is sick he gets more attention from the parents and that can make the other sibling angry and jealous.Try to be understanding with how your sibling feels and if you see that he is being unfair or judgemental avoid any discussion about health issues or topics which may end up in argument.

Relationships are fragile and someone should always be a bit wiser and more mature in order to make it work.

[potsgirl]

ajw~

I can really relate to what you're saying. My boyfriend was diagnosed with prostate cancer last spring, and his brother had previously died from the same illness about 10 years ago when he was younger than my boyfriend. They ended up having to take everything out, including all of his nerves in the entire area. It was a very, very difficult time. I tried as much as possible to put my own illness to the back burner, and to just concentrate on him and being there for him as his support. He's been so wonderful to me all these years, it was the very least I could do.

I realize the situations are not the same as you are dealing with someone you're not very close to. However, cancer and our illness are two totally different things. You mentioned them...One usually won't deal with the fear of mortality, and the other one most certainly does. I think that the more you can separate your illness from theirs, the better. They are not the same - not even close. Please don't feel guilty over that which you have no control. Do your best to show the appropriate level of concern to this person, and worry about your own illness and take care of yourself at the same time. Different circumstances, no guilt.

Hope this helped just a little,

Jana

[gertie]

I guess it's because I'm a senior & everybody expects an old person to be ill but I never mention my problems. I always put the focus on the other guest or family members especially if they have a health problem. I've learned over the years no one wants to hear about my problems. I've had people complain to me saying, "be glad you don't have my problems" & maybe all they had was a sore knee or something that is trivial to me. I do understand what you're saying & I've had the same thoughts.

[firewatcher]

There is no way that you can change their thinking or how they react to you. You must find a "place of grace" within yourself. You know that you have an invisible chronic illness, you have all your hair, you have all your limbs and most of your faculties work adequately...so to them you are not sick. This is their problem and there is nothing you can do other than accept their ignorance. I'm sorry that your family is not supportive, but your friends here are! Let it go if you can, it is hard!

[MomtoGiuliana]

Perhaps they need to watch the new DINET documentary.

It's definitely not fair for you to be compared to someone with a different medical problem. It doesn't even make sense. That's hard.

My parents saw the DINET documentary and my dad seems to get it in a way he did not before.

[erikainorlando]

YES I get it!! Kudos to you for reaching out here for support!! Sometimes I think cancer and other terrible illnesses are perhpas easier to deal with as there is an end in sight!! And of course I understand their suffering as well...and am in no way making light of it.

I have even had friends say to me that at least with this autoimmiune illness (I had Guillain Bartre and was totally paralyzed for months) I am not as sick. While I really hate comoparing pain...as pain and suffering is pain and sufferring..I mention to them that at least GBS came and hit and left...it was totally frgithening, terrible, woorse than terrible..but I had tons of support from everyone..no one said it was in my head...no one didn't admire my strength for living thru another day...but not so with this illness.

I love what Firewatcher said about the place of grace.. I pray a lot..so I would probably ask god to help me find the strength in my heart to simply be supportive of this other ill person. It is hard to be discounted especially when we feel so ill..but we have to be the person that remembers how to support ourselves as many simply won't get it. Still I don't spend a lot of time with people who invalidate me and my experiences...

We are all here for you...Erika

[Tachy Phlegming]

What are the options?

You could say "Oh no, I can't believe it", start crying, ask whether your relative feels like he's dying, tell him he'll never get over that fear, tell him how absolutely stoic he is for not complaining ever and working, and discuss his impending death over the next umpteen years.

You could instead discuss how optimistic you are about his recovery, say you are unconcerned about the recurrence of the cancer, and call before and after the procedure with words of encouragement.

I'd choose the latter. In fact, it might not reflect too well on you for myriad reasons if you choose the former. The relative may also be calmed down considerably by having people downplay the illness.

I'd save the first response for relatives who suffer a lot, have a lot of pain, agony, or incapacity from whatever illness it is, cancer or not cancer. (Hint: you'll know when it's bad because they will not be able to do anything without considerations of illness and they'll complain a lot).

I don't know, before getting so sick, I always really felt for people with a bunch of strange symptoms who didn't know what they had and felt deathly ill -- and those who had less well-known diseases; I was frightened for their incapacity or early death to the same extent as I was for people with cancer. I still think the same.

[janiedelite]

I'm very sorry that your family and friends don't fully support you as you struggle with your illness. Family dynamics are always somewhat difficult, even in the best of circumstances. You would hope that those who've seen you grow up would come along side you during times of difficulty. They probably can understand when someone comes down with cancer more fully, than a chronic illness like dysautonomia. Cancers have been researched. There are meds to treat it. There's a beginning and an end to its course (unfortunately not all endings are pleasant).

It might be that they can understand better how it is to come down with an illness, treat it, and move on. Unfortunately, your illness is one you wake up to every day.

My mom got sick with carcinoid cancer when she was the age that I am now. It took 8 years to get diagnosed. When she was diagnosed, she was rushed into surgery and told to get her affairs in order because there were tumors all over her abdomen. She and my dad prayed that God would heal her and seven years went by. During that time she assumed she was healed. Also, during those initial eight years of her illness I was harboring bitterness against her because of childhood events. I hope I didn't add to her suffering, but I probably did. She never called me when she was diagnosed. I lived in another state and found out afterward that she'd had surgery for cancer. But I was never told her prognosis. It was too much for my parents to have to deal with, themselves, and interacting with me would have just added to their stress.

Four years ago, I had moved back to my hometown and was staying with my parents while saving money for a house. We had mended fences and were polite to each other, with the hope that we could re-establish a relationship. While I was living with them, my mom got sick again and received confirmation that her cancer had returned. At that time, I was told of the previous prognosis. I worked as a nurse, and saw the suffering that cancer patients endure. I knew the road my mom would take. I didn't want to cause her any more suffering, so we decided to live without regrets from that day on. We are still honest with each other, but I should have realized even before she got sick again that life is too short to live with bitterness.

I certainly don't want to downplay the depth of the rifts in the relationships between you and your family members. There are some family members who don't understand my illness, but I don't rely on them for any support either. I know what I can expect from people, and I try to just "fill my own cup" as much as possible. On the flip side, my mom has become my biggest supporter as I've gotten more sick. I'm thankful I didn't close that door.

I was unsure as to whether or not to send off this post because I don't want you to feel as though your feelings regarding lack of support are being ignored. I hope it's not taken that way, as I've posted many times myself needing reassurance and support.

[taylortotmom]

I can relate to your post far more than I care to get into right now. Cancer IS awful. But so is heart disease. So is diabetes. So is stroke. And dysautonomia is certainly, awful. The difference is chronic illness as opposed to terminal illness. People just do not show compassion to chronic illness like they would with a cancer diagnosis- even if it is caught early and the mortality is very low. Chronic illness is so misunderstood. We can't just have a surgery or take a pill and be okay. We aren't drug addicts. We aren't malingering. Sooooo what do you do? Since you state you have a difficult relationship with the sibling- I would really just limit how much contact you have with the individual. There are some people that will NEVER understand dysautonomia- nor do they want to- so just let it go. Show support to the cancer patient- but take care of your own mental and physical health. It is hurtful and hard to see "those" looks and hear "those" words (condescending words, glares, etc)- just avoid being a part of that experience as much as you can. I really do feel for you and I am so sorry you are in that situation.

Carmen

[Brye]

I have a friend that got sick at around the same time I did 2 years ago. She was diagnosed with colon cancer. We had a lot in common and although they were 2 completely different illnesses we were both fighting for our health. We were both dealing with the frustrations of doctors, insurance companies, and health care providers. She passed away less than 1 year after her diagnosis and I miss her dearly!! We were supporting each other through our illness. It has made me appreciate each day! I don't worry about what other people think and have a better appreciation of just being here to enjoy my family! Good luck to you and hope you can overcome your differences and learn to support each other!!

Brye

[tlserenity]

I had Endometrial cancer when I was 22 - thankfully I had already had two sons - I had to have my uterus removed - also thankfully that was the end of my cancer.

Now I have POT's - to be honest - there are times i almost wish it was cancer again - then it could be removed from my body!

But my thoughts when I read your post was this -

Have you heard the story of being told to go into a room of crosses (representing of course our trials in life) and leave yours and choose any others in there in trade? As the story goes - all that go in and lift the weight of another's cross that they bear - will come out carrying the one they went in with. Because we are given the tools to carry the ones we are given.

I have often thought of finding this story in print and sending it out to my family - ALL of our crosses that we carry are heavy - we are all given trials in this life - if we weren't there would be no reason for us to be here.

I pray your family comes around and sees that you need/deserve their support.

Just because our illness isn't clearly visible - doesn't make it any easier to carry.

[ajw4790]

Hi all!

Thanks so much for all your responses. It means and helps a lot that there are others out there that understand this, and that you all offered your thoughts and suggestions. I am also happy that many of you thought it was an important topic, and one that you could identify with as well. As you guys know, sometimes you can feel alone with some of these thoughts or feelings, and feel that it is just you, and something that you just have to get over and deal with. It is just not always that easy to do.

As far as my situation my sibling and there significant other have cut me off from communication previous to learning the cancer diagnosis. So, all in all we do not talk. It is not the way I wish it, and I have tried repeatedly to work on our relationship, but others are not so up to working out our differences. But, they talk to my parents, and since I live with my parents. I do kind of get the vibe, picture, comments etc. from them about the situation. My parents all in all are understanding, but you can tell sometimes that they struggle with why someone with cancer can be so functional yet I can not.

Even though I was told not to email my sibling anymore, I have wrote two short messages to them. I was very nice, and tried to say that I could not imagine what all they are having to go through, and for them to take care of themselves. Wished them the best, and told them that I was happy that it was caught early, and that it sounds like they are getting good medical care. Also, told them that we were here to help them if they needed it and to call us if needed. So, I have tried to be very civil, offer assistance, sending best wishes, and express my concern of their health (but not act like it is a death sentence- as someone pointed out as a choice to go, but rather that I was optimistic about the medical care they have gotten).

I do agree that a terminal and a chronic illness are two very different things, but yet can be very hard to differentiate in real life. I would like for my sibling and spouse to at sometime watch the dvd etc., but they are very not open to any of this, and I do not believe they would come away with the intended message of the dvd. Especially if I gave it to them at this time, where they are both dealing with the cancer treatments etc.

Thank you everyone for all your thoughts and input! It helps so much to hear that others deal with this as well, and that there is a way to separate the two very different conditions.

Thanks!!!

[bkweavers]

Boy, did you hit a nerve with me! I can't tell you how many times people have said to me, "Well, at least your daughter doesn't have cancer!" I finally said to a neighbor,"that that doesn't make my daughter's illness any easier." I wish I would have said a lot more and the next time someone says that to me, I will be prepared. I guess what hurts the most about people saying things like this is that when it is someone close to us, they've seen what's been going on. My neighbor has been around my daughter constantly over the last 34 months and has seen her struggle. I'm still wondering if I should confront her and tell her how much that statement hurt because my daughter is very debilitated and for her to brush it off so lightly, is so unthinking. And this woman is a nurse!

The thing I find ironic in all of this is that we currently have 2 little children in my church with leukemia. I've talked at length with both parents and we have so much in common. We talked about the stress on our marriages, our other children, finances etc. and many things are the same. One father even said to me that when his child was diagnosed, he thought of us and how he could now relate to what we had been going through. I guess the bottom line is that unless you've been thru some rough times, you just don't understand what it is like to deal with illness. I never say to people that I understand what they're going thru unless it's the exact thing I've experienced. I also have more compassion for others.

I wish our society would as a whole, add compassion and understanding and not be so quick to judge. We would all be much better off. Oh, and I pray a lot too. For God to take away some of the anger, to give me patience, and for people to be more understanding.

Brenda