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When People Just Don't Get It

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Hey Everyone,


I guess I'm kinda venting right now. I talked to my therapist about this today, but I feel like I'll get the most help here...



Has anyone had an experience where someone you trusted and thought was supporting you just completely turns on you about having a chronic condition?


I had a situation where a close friend completely erupted on me last week about my newly diagnosed scleroderma. I have tried my absolute best to be discrete and unselfish about sharing how I feel. I don't like to always be talking about how much pain I'm in in fear of being called a complainer (and I'm in excruciating constant pain). It's almost like I suffer in silence a lot just not to have someone judge me or yell at me for feeling the way I do. My friend just erupted on me about all the doctors I see, and that a lot of this is just in my head, etc. It's almost like I have to censor myself about what I say. I've sent out the Spoon Theory that was recommended by another member, and this friend couldn't be bothered with "how long it was". I don't really know how to handle this, I'm actually quite heartbroken about it. Just when you think you can trust someone to be understanding...


I guess I'm just seeing if anyone else ever experienced this, and if you did, how did you handle it?


Any thoughts/suggestions would be greatly appreciated!


Thanks everyone!


~ J

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Hi Martinisweetie,


I had a similar experience with a good friend. I hadn't said much to anyone about the problems I have because otherwise I sound like I do nothing but complain. Well, one day I just had to confide in her about all the troubles I was having health wise, and with issues with my hubby unemployed. It was awful. She said that I should be finding someone to talk to about my depression and said it with very curt words. I was quite hurt. I know that she has dealt with depression and has been on medication, but I never told her that she was doing the wrong things.


I really haven't spoken with her since then, other than when we run into each other at school functions. Then it is just hi and smile and make some small talk. I never told her that she hurt me quite badly and I don't know if I feel up to calling her to try to re-establish our friendship. I found myself avoiding her at the grocery store the other day, making sure to get in a lane away from where she was.


I am sort of waiting to see if she will make contact again. I know that I have not handled this the best, but it is all I am up to doing at this time. I hope something better happens in your situation.


I'm sure it was a little bit of a shock for her to find out that you have this condition and she probably will need time to process it, even grieve a little for her friend. If she can't handle the new reality you live in, then I think as painful as it is, you need to move on. It isn't worth more stress trying to fix the situation yourself.


I've been working on finding new friends in my knitting group, and while we aren't as close as my good friend and I were, we are getting to a point where we can talk about virtually anything. They know about my health issues and they aren't giving me negative feedback when I talk about it.


Best to you.



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Well, I don't know....to me, it certainly doesn't sound like a "good" or "true" type of friend at all. Unless she came back with an apology, I would put it (and her) behind me. With everything that we go through, none of us need that type of friendship. I would be extremely hurt. Isn't "understanding" a part of being a friend? It's too bad and it's her loss if she loses you as her friend. JMO... :emoticon-hug:

Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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I'm so sorry to read about what happened between you and your friend. Unfortunately, what you experienced is not uncommon. We all have "friends" that can't handle change and don't want to believe that you are ill and that it will change you and thus the relationship that you two have. So the way she is acting, may be the only way that she knows how to handle it because she doesn't want to believe it. I've had this disease for over 7 years now and I have lost a couple of friends that I had had for over 20 years. However, I have also develop new friendships. These new friendship are with people that understand what I am going through or "care" enough about me that they are willing to accept what I can and can't do. So unfortunately, sometimes - sick or not - we do lose friends, but there are always others out there. It might be good to distance yourself for a while and see what happens. Maybe your friend will do some of her own research to better understand what you are dealing with; however, if she doesn't, then maybe the continued friendship was not meant to be during this stage of your life. I know this is tough. It was tough for me, but I'm better off now and have some great relationships with new people. Please try to more forward so that you can reduce the amount of stress. Stress is NOT good for us. I know that's easier said than done, but stress is always something we should always try to manage.


I'm so glad that you are using this forum to vent. That's what we are hear for and I hope it helps you.

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi J,


Oh yeah, I've run into the same thing (or worse) with some friends and family members. It was very bewildering to me at first. Now I understand that we just can't expect others to understand, or to be compassionate, or to 'get it'. Who knows what their issues are?


It's not just confined to scleroderma. My husband encountered the same thing, with some people saying, when he was on 6+ liters of oxygen and awaiting a lung transplant, that he was just too lazy and needed to take off his oxygen and go for a long walk around the lake and that would 'cure' him. This is even though he worked part time as a restaurant greeter, walked a half hour every day and went to sit and be fit classes twice a week, all of which is an extremely high level of activity for someone in his then-weakened state (he had a lung transplant a year ago this month.)


Anyway, to summarize, we have both gotten lectures about how doctors had just brainwashed us into believing we are sick in order to make money off of us. We've also been advised of (phoney baloney) 'cures' from many well-meaning people. I could go on and on, but it would just be depressing, and it is our personal responsibility to somehow lift ourselves up above the muck, and build an attitude greater than any problem we have, in order to be happy and relieve stress.


The thing to understand is, it's not just you. The situation just revealed things about your friend that you didn't know before so now you may want to revise your relationship with her. As in, don't share medical information with her if she can't handle it. Keep in mind that some people can be perfectly great friends for other interests you have, but not be able to handle your illness. For example, we can have art friends, knitting friends, go to coffee friends, work friends, all of whom might fall apart at the seams with any serious discussion of our illness.


It's very normal for us to have spouses who don't entirely get it, or can handle just a tiny chunk of it, but that doesn't endanger a marriage unless we let it. Walking a mile in another's shoes is not an easy thing to do, and you can bet that as many people who don't 'get' our situation, we equally do not 'get' things that are vitally important to them!


Besides, do you really want a friend who is entirely sympathetic? They might let you wallow in the pain or let you go on for hours about how horrible it all is, and distract you from the real work of growing through this. Maybe you have enough other areas of interests that you can both agree to shelve this particular topic, and go on as usual about the rest. It wouldn't necessarily mean she doesn't love you, just that she is very poor at discussing health issues. Perhaps. You can suss that angle out with your counselor.


It's okay to feel hurt by this, it's okay to let go of the anger, it's okay to move on, and it's okay to try to mend the friendship if you can or if you want. We are all here for you!



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hi J


When I first began to feel ill and before I was diagnosed I didn't mention very much about it to anyone apart from my best friend whom I pressganged persuaded to accompany me to see my local consultant. Once I visited The Royal Brompton Hospital and was diagnosed, however, I'm afraid I bored all and sundry with every minute detail of my condition and treatment. :rolleyes: Most of my friends have been very good about it, although I could tell by the glazed expression in their eyes and the way they avoided asking the question "How are you today?" for fear I would actually tell them, that it was becoming rather tedious. Rather than becoming a social leper, I now only mention my illness if they specifically ask. I have to say though that most people have been quite supportive especially in the beginning.


I know it's very difficult, J, but I think you'll have to perhaps step back a little from your friend and try not to feel too hurt by her remarks. As the others have said, she probably can't handle your illness and this is her way of coping with it, however hurtful it seems to you.


Remember that you have always got understanding friends on these forums who can totally empathise with you. I always consider that to be the bonus of having Scleroderma; if I hadn't contracted it how would I ever have got to know all the lovely people here!! :VeryHappy:

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi there J. The replies to your post I cannot emphasize enough are so true! I am going through that also... we all do. My own mother wants me to hide my disease from my children ( girls ages 15 and 8) so I don't scare them or worry them. My sister is a registered nurse and doesn't seem to get it. She went so far as to say (and I never got this diagnosis) that doctors just give people a Fibromyalgia diagnosis just to make them happy. Arthralgia is certainly a part of this disease, but I would never mention this to her because all I would get is the rolling of the eyes.


It is hurtful to those of us suffering from this disease to have our closest friends and family think it's all in our heads. All I can really add is that 1) this is a great forum to come to where we all understand each other's maladies and 2) you cannot control what people say or think of you. That was a hard pill to swallow for me.


None of us walk on water. Sometimes we must silently forgive those who do not want to understand and move on without them. Sometimes, they come around! One of my friends was an "eye-roller" until she read the spoon theory and actually brought me a bouquet of spoons and flowers (along with another friend whose daughter has Lupus at the young age of 12).


Thinking of you and hang in there!

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Hi J,


My wife didn`t tell anyone for two years as she didn`t want to scare our two boys. She told me not to talk to anyone as she felt others wouldn`t understand. I found it difficult to cope with but found solace in just reading the post on this website and it helped me a great deal. She was in denial for a while and wouldn`t read about the condition. Since she got better after her stemcell transplant at the Northwestern she is shouting from the roof tops about her treatment and stood in front of 120 people with autoimmune disease about her journey with sclero on Friday.

All the best,


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Well, illness can certainly tell you who your true friends are!


I have been fortunate, my friends from the job I had to retire from have stayed with me and we get together every once in a while for dinner and occasionally a Girl's Weekend Away. They are younger than I am, work full-time and have kids so their time is very limited. They always include me and worked things around dialysis. They were my primary friends before scleroderma hit as my life basically revolved around work. However, I haven't really discussed scleroderma with them, as I mentioned before, I think I was pretty much in denial, everything was good as far as I was concerned. After my transplant, when I was in isolation, I sent out emails to please email me as it was my only contact with the outside world and didn't get a word from them. :glare:


When I realized I needed a kidney transplant and was scared out of my wits, I went back to a Grief and Bereavement Counselor I had seen when my mother was dying to help me through the process. She was who I vented to, as well as the social worker in dialysis.


Oddly, there were two friends who helped me tremendously through my transplant process and I wasn't even close with either of them. One was a woman I worked with who retired a year after I did. The other is a school friend who, although we were not close friends, were in class together from Kindergarten- 12th grade, quite an event! Both of them had the time to write daily, long emails and helped me through the many issues I was dealing with, loneliness, urinating all the time, etc. :girly1-by-lisa-volz: We have become very close although are communication is not as frequent now, but they were there when I needed them.


My high school friends started getting together for "minifests" about 4 years ago and we meet a couple of times a year, plus my girlfriends from high school get together for dinner every once in a while. It is our 40th reunion :barf: this year and I am active planning that. At this age, everyone has health issues. We share, but no one wants to bore each other with the details. We'd sound like little old people :excl: :excl:


A couple of years ago I joined a social networking group which led to my involvement in a dream granting organization for sick children. Again, I didn't go into detail with the disease. They knew I had scleroderma and had kidney failure. They have turned out to be really good friends. Not only are we active as an organization, but over the holidays had social events so I was a party girl!


I have become more involved with the women in the condos I live in. Before, I was so involved with work, I just wanted to come home and be with my husband. Then I was so sick I had no interest in friendships with them. Now we get together on occasion for lunch and they really are a nice group of people.


My husband is extremely supportive and listens and has been with me every step of the way. He sometimes doesn't realize my limitations to the fullest but has cooked, cleaned, shopped and gone to doctors with me. He has been my best friend, nurse and caregiver.


:thank-you: This forum is where I would come to vent, question and learn.



As I travel on this life journey I learn more and more that we all have issues in our lives, aging parents, illness, dying spouses, financial problems, job issues and on and on. Your friends are a precious gift, so don't shut her out just because she isn't open to hearing about your illness, just don't talk about it with her. If you need someone to talk with, find a friend who IS receptive, come to this forum, or seek professional help.



ISN Artist

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Hello J


Unfortunately length of time in a friendship does not always translate to the depth in the friendship. In addition we have a different levels of friendship with each friend, for example one friendship may be on a lower level and another on a higher level, the first you wouldn't discuss deep issues with but the second you could. I'm afraid it's a case of allocating friends to their correct levels and leaving them there. Rather than dismiss the friend you mentioned or take it personally, simply relegate said friend to a lower level and leave them there, that way you know what you can expect from them in future, very little, and aren't disappointed again. The positive is that you now have a vacancy for a high level friendship so happy hunting.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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