Feeling abandoned by family/friends - anyone relate?

I’m brand new to this website, so I don’t know if I’m basically talking to a wall here. But even walls can be therapeutic.

Short story – my 27 y/o girlfriend has recurrent non-Hodgkins lymphoma (B cell follicular) and the cancer is actually the lesser of two evils. Last fall, she was also diagnosed with a very rare, very serious genetic condition called Ehlers-Danlos Syndrome (vascular). The two diseases make quite a tag team; basically every part of her body is affected, head to toe. A combination of factors pretty much guarantees that she won’t live to be 50. Even 40 is a longshot.

Needless to say, dealing with both diseases has been an enormous struggle for both of us. But out of all the challenges we’ve faced, I think the most surprising one is how much we’ve both been abandoned by family/friends. Her family has generally been supportive to her, but many of her friends have slowly distanced themselves from her. A couple of them even told me that they’re frustrated she isn’t the person she used to be (i.e., she doesn’t party as much). Some of them say all the right things (“I’ll always be there for you”) but when push comes to shove, they bail.

As for me, my family/friends treat her health as the elephant in the room. If I bring it up, they just kinda look the other way as though I didn’t say anything. The biggest shock to me is how her family has not reached out to me at all. We live in Chicago and they live in Ohio – so they’re reasonably close, but far enough that I’m her primary support. Pretty much her only support in Chicago. Her family should know that it takes a network of people to support someone through cancer, yet they've never reached out to help, not even to ask me how things are going.

I’ve read that this is a common occurrence because many people freak out when someone they know and “care about” has cancer. But I’ve never spoken to anyone who can relate. Anybody else have similar experiences?

Comments

  • 15 Comments sorted by Votes Date Added
  • I am a care giver to a wife with a brain tumor, so I can address some of your issues.

    When my wife first got diagnosed, there was an outpouring of concern...friends dropped off food, emailed, called ,etc.

    A few years later (she recently had a recurrence) most everyone has sort of bailed, or my wife has chosen not to use her energy keeping up certain friendships. I've found that our two lives have hit the 'pause' button while everyone around us is moving on: new jobs, starting families, getting married, going on big trips, partying and so forth. Basically, stuff that my wife can't do and therefore, I can't do either. My life has slowed to a crawl both socially and work-wise. It has to for me to take care of my wife properly. Part of the deal I made when I got married.

    One of the worst things is facebook. Since my wife can't do a whole lot, she basically has become a recluse, staying indoors all day and looking at facebook which has an endless supply of photos where her friends and associates are doing all of the above activitites. You don't realize how much you're missing until you see everyone else but yourself doing it!

    If you're looking for advice, I have this: stay away from facebook and keep the activities going for your girlfriend. My big outing with my wife is going to a nearby coffee house. It's low impact and my wife can people watch...there's always a bit of an energy in even your least busy Starbucks, or where ever you might go for a java.

    Keep busy. Your girlfriend's friends are at an age where her illness won't keep them from doing whatever they want to do first and foremost. It's not a slight. It's just the nature of the business.

    With your family, who knows? They probably don't know what to say. The thing is, they don't have to say much. But that's hard for a lot of people.

    My wife's step-father is a doctor and I can't believe how detatched he is to the whole situation. Weird how so many people choose not to be involved.

    Again, keep you and your girlfriend as busy as you can! I hope she feels better.
  • Yep. It happens. I did not experience it with most of my family. My sister, maybe. She never really made any sort of effort to check up on me while I was going through treatment. Most other family at least made an effort to check up on me every now and again. Some even traveled to visit (I am in Texas currently, while they are mostly in Indiana and Michigan).

    I will say this, that even of the ones that came to visit, most made no effort to make sure I was excluded from petty drama. I have actually had to remove MYSELF from some family relationships (inlaws) because of stupid drama.

    Friends were a different story entirely. I was just barely 28 at diagnosis, so very similiar to your girlfriend. I was never a party sort, but I did like being social. I made sure everyone was aware that there were times that I COULD go out into public and have fun, but the invites stopped coming. I even invited friends to come over to see ME, and some even avoided that. When I returned to graduate school work and was very stressed by a fairly light workload, one even felt the need to guilt trip me. She had been very supportive of my wife, and at one point she went psycho on my wife when my wife needed a shoulder to cry on at one point (an incident unrelated to my illness). Neither of us really consider her a friend anymore.

    I actually got the most emotional support from friends I had not seen in YEARS. By my count, I had not had contact with some of them for better a decade. Some, even, I consider friends now, but 10yrs ago they were merely acquaintances. Many of them heard on the grapevine what was going on with me and sought me out on Facebook.

    There are many variations on the theme, but it's a common experience in some way or another. Even for people who do not have cancer. I have a friend going through the same thing who is chronically sick, but does not have cancer.

    One thing that might help your girlfriend is to make some cancer survivor/patient friends. There are a ton of activities, groups, and retreats available. I attended one in Austin, TX with folks from across the country and made some great friends that way. We keep in touch. Some have passed away. Some have had recurrences (and survived). Some are as healthy as can be expected. I would like to attend a few more. There are some awesome outdoor-related retreats like First Descents that I'd love to do. Since you're in Chicago, you should look into the local Stupid Cancer chapter. I know there's one up there.
  • I totally know that feeling my husband was dignosed in January with stage 4 colon cancer and my husband family has dismissed it all the way. Never can to any of the surgeries or the chemo so far. My family has been there for us all the way. But at the same time they do not understand why his family has not been there for him.
  • I am so sorry about your girlfriend. My daughter has not been abandoned but, blessed so much by the community and everyone. What have you done to reach out to talk to them? Writing a letter is sometimes good to let them know how you feel. Remember that some people are very scared and worried and don't like to talk about it. It is wrong but, they are that way.
    I would suggest getting out there and starting a blog or something they can read to keep updates. Stay in the word and claim healing. Study that info and all sides of healing. We don't listen to the Doctors and just do whatever they say. I study and study things. Learn all you can. I will be praying for you both.
    Thank you for standing by her side. My daughter got engaged after her diagnosis this past July. They are planning a wedding in Aug. Keep your chin up and know that good thing will come out of this. If you love her get married and move on without everyone and enjoy the time you have. +
    Isaiah 54:17 no weapon forged against you will prevail, and you will refute every tongue that accuses you. This is the heritage of the servants of the LORD, and this is their vindication from me," declares the LORD.
    www.toririley.com
  • I'm so sorry to hear what you're going through. And you are not alone as you might think! My husband lost most of his friends when he got DX over two years ago! He is down to one friend and maybe his brother/cousin sometimes. We live 30 minutes away and people act like it's another country! :( He is very lonely and feels like everyone has forgotten him. In reality people just can't act normal around him I guess it's too hard for them. When all we want is to feel normal...like treat us like this disease isn't happening...we have enough to deal with ya know?!

    I would say reach out you will find a new source for friendships sometimes when you least expect it!
  • I am sorry to hear about your struggle. I can definitely relate. I definitely feel alone. Aside from my parents/brother who traveled by plane to take care of me, no one visited, sent food, cards, or any form of support. Not one email, text, or phone call from those who knew I was ill, or from those who should have noticed that I "disappeared." It was very very hurtful. I sat isolated in my apartment, far from my hometown, friends and family for days on end, with no one to talk to except my husband who was at work all day, and facebook. I didn't know about stupidcancer at the time, and was hesitant to attend an in-person support group because of my young age (felt like I would only find "older" people at the group, thus making myself feel worse).

    As mtbikernate said, I also had the issue of family drama from in laws! It was unbelievable what they piled on my shoulders and my parents shoulders during such a difficult time. People (including in laws) just don't care about other people. I found that they don't care about exposing you to a cold, staying at your house late at night when you should be sleeping, creating drama and emotional pain, and harassing those who ARE trying to help you. Now even my husband is disengaged from my recovery, even though I am still struggling. Now he even treats my parents badly when they are trying so hard to help me, and becoming very old and sick in this long process. It is all very depressing, and very hurtful that my husband would disengage in this manner. I am glad I found stupid cancer to hear about other people with similar struggles, and also to share what I went though, although I am sorry that others struggle. If anyone has any advice dealing with the spouse issue, I would really appreciate it.
  • ckck Community Member
    Yes this all sounds sadly familiar.  My family told me that they would "learn as we go" when I was diagnosed with stage IV metastatic Melanoma two years ago.  That never happened.  I am constantly left out of things, not invited, and even blamed for problems within the family now.  I have contemplated ending my life at times just to release my husband and kids from the torture of it all; but I really am not like that.  I have fought extremely hard, and continue to endure surgeries to remove tumors in order to live.  It's like it didn't have a direct affect on their lives, so they go about like nothing ever happened.  I tried talking to my brothers about the horrible depression and being lonely, and they act like they don't even hear me.  It is a terrible feeling, but somehow we have to look around at those people, if only few, and not relatives even; are still here for us.  I don't know if it really helps to hear it, but you are not alone in this, and the feelings are justified.  I know I feel better knowing it's not just my family and friends that have let me down.  It's so sad, and honestly,.........their loss in the end, not yours.
  • DadDad Community Member
    Our son died from Head and neck cancer in 2012. The 16 months which proceeded his death were tough on his friends and family. He was engaged at the time of diagnosis and she was absent at the time of his death. I'm not in the position to judge as to the 'why'.  Cancer creates a very personal 'journey' for all involved. I've seen everybody handle it completely different. Not judging peoples efforts is at times harder than dealing with challenges this disease presents to the actual patient. It's an emotional roller coaster inside of a breaking wave wash out. I found that focusing on the patient made this challenge easier to deal with for me at least. People aren't going to change, but, the patient's shopping still needs to be done...their co-pays still need to be paid and most of all THEIR self respect still needs to be maintained. Our son was 27 when he passed. Our hearts have been broken and we're doing our best to pick up the pieces of our lives worth salvaging.


  • ProfProf Community Member
    Yes, I can relate.  My wife was diagnosed with NH lymphoma in June.  I was diagnosed with bladder cancer in November.  Not a good year....

    As others have described, our experiences were varied.  We have each had a few close friends who were able, as my wife says to "sit with her on the cliff."  My sense is that these are people who know and cherish us as us, and so the room is not dominated by the elephant.  When we feel like talking about aspects of our illnesses, they are responsive.  When we won't, they are equally responsive.  So the key is that, for these people, we never stopped being who we are.  Because some cells went off the reservation did not tun us into alien creatures.

    Still, there were some cruel surprises.  One 25-year friend of mine had literally spent a week visiting us two weeks before my wife's diagnosis.  He is himself a doc--and a good one--and had been there for me during some heart issues a few years ago.  He was actually more involved than I asked or needed..  But shortly after the cancer diagnosis he and his wife stopped answering emails.  I wondered if something terrible had happened to them.  When I called, I learned that our phone number had literally been blocked by their line.  We were, in essence, poofed.  (I reconfirmed this by trying to call a couple of times and kept getting the block message.)

    After this, I sent a couple of emails, simply asking that we talk.  I would not argue or ask anything more.  We just hoped to understand.  Was there something we did?  Some problem we didn't know, etc.:  I even crafted a multiple choice email so he could choose the explanation that best fit (or none of the above) and answer with a single letter.  

    It's now been a year.  There has been no response at all.  As I did finally write to him, and assuming nothing awful happened in their own lives, it was the cruelest and most cowardly thing anyone ever did to us.
  • oceanislecanceroceanislecancer Community Member
    edited February 10 Vote Up0Vote Down
  • I am going through this. My roommate Tim was diagnosed with PC 1 year ago. Today he was crying and said "Kelly (my daughter) won't even come see me in my worst days. All I want to do is get out of the house and do things. I don't care if I'm sick!"

    Well.. Tim has helped me for 3 years. Having become disabled after a 35 year career as a chef I was now unable to work and on Social Services waiting for SSD. I paid half the rent, as much as possible on anything else. Helped when able with his business and asked for nothing. I am so grateful to this man for helping me and being there when everyone else has bailed. I never asked or rarely did but he always offered when he knew I needed something. It has been rough indeed. He is like a son, a brother a good friend and even a father to me. Now I have been helping him for the last year. I am disgusted by all the people I have seen come through prior to his sickness and now...nobody. One long time friend of his couldn't get out of the house quick enough when he heard the word "CANCER".. almost knocking me over! Tim was an outgoing independent person always had a girlfriend..always! Lots of male friends and well.. his family lives out of State.
    I understand people don't want to see sickness ..especially Cancer but grow up. Show some love and consideration. They act as if it is something they can catch.
    I see Tim everyday.. yes.. I see the difference..the weight loss and scars from surgery. I have been through 2 sisters and both parents Cancers so maybe I am just hardened by it a little but I cannot comprehend why someone would stop visiting an old friend..stop calling etc.
    There are the few with the empty promises of coming through.. taking him out but that does not happen.
    Well..my SSD is coming in 2 weeks and we will have more than enough $$ to get out and do things as he wishes to. I owe this guy a lot. Payback is going to be fun and I intend to try my damn best to make him happy. Get the supplements and fresh foods needed to fight this demon. To all the people that have turned from a friend or family member because of cancer and not wanting to see them sick... grow up. To all the ones in our lives that have...I will see you again soon...we will be out and about. All I will say is "where'd you been hiding?" and when they look away or down and answer all I will ask of them is..please..tell Tim that..not me.
  • johnjonjohnjon Community Member
    I stumbled across this site tonight because I too have been abandoned by family and friends. I was diagnosed in August 2016, had surgery in January, spent 6 weeks in the hospital. Was released in February. I feel like I have beg for attention from people I once thought were going to be there for me. The few times I have reached out for help from those who initially offered, I have been ignored. A good friend didn't understand that, no, I couldn't go out to lunch or dinner after a 6 week hospital stay. She countered with, well, of course she would pay. A few weeks ago when I felt I was able to accept her invitation, she didn't show up, and didn't understand when I was furious with her. No one calls, I have to initiate any contact with people. One friend who was in the health care field never calls at all, and when I do call him, he never asks how I am. I don't know how much more of this I can handle. I am currently in the middle of chemo. I never would have gotten through any of this without my husband by my side. It's a burden he doesn't complain about, but I still feel like family and friends should have been part of my illness and recovery. It's very discouraging. I cry a lot, and wonder why I'm being treated like this. It makes me wonder about the future, and why I should even continue to contact people who obviously could care less. I get scared and wonder if I'll ever fully recover. I don't know what else to say. As my husband said just this evening, it's all so pathetic. I'd never wish this on anyone, especially the loneliness.
  • ProfProf Community Member
    There is no topic more often discussed in my cancer support group than abandonment. The Mayo clinic and Team Inspire have also had long threads about this. Johnjon, is there any support group near you? It's too bad, in a way, that we have to rely on other patients. It "ghettoizes" the experience. But it is often the only way.
  • ValerieC78ValerieC78 Community Member
    So I just joined after finding this post in a search. First off, Husky77 if you are still here I am so sorry about your girlfriend.
    This post perfectly illustrates where my mind has been lately. As primary caregiver I have been so baffled by what has gone on during this process. I want to thank all who responded for making me realize that I am not alone. Your sharing is of great comfort.