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Vasculitis UK
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It's hard to stay upbeat when you no longer get invited to the party

Ok I need to vent. None of my friends know about this site so they won't know I'm complaining about them. This just sucks. I really have been trying very hard to be positive. I talk to my friends and family about my "comeback" as though I really believe that if I try hard enough I really will actually be able to be fairly normal again. I try to make light of my worries because I know that it is no fun for them to be burdened with listening to my problems.....I don't act delusional , but I shrug it off and try to keep going as best I can. When asked how I'm doing I usually say fine. .... but my friends don't contact me like before. There are no more vacation invitations..... some confide in my daughter and tell her that they just avoid me now because they feel very bad for me and are uncomfortable. ...... that seems like a cheap, crappy thing to do. My friends suck. It's been a crappy week. I dragged my ass to the store and bought new clothes for a business invention that me and my husband and daughter had to attend because we are Canadian business owners and we have attended these conventions annually for fourteen years. We have close friends also in the business who always attend with us and we always have a ton of fun and life of the party type event..... until I got sick. This year everything is different..... ditched again ..... they are out till all hours and I'm too sick to do much except go to my hotel room early and lie in bed missing all the fun again. This just sucks. Now they don't even answer my texts any more. I'm not dead yet! Hey who knows... I might even make a comeback if I try hard enough...sorry to complain

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Same!

I've got some nice new friends now, in the end, but I don't know anyone closely, apart from my family, that I knew when I was well. And every time I lost one it was SO PAINFUL AND SAD. Much worse than the illness. It takes so much energy to be upset, and it's energy we don't have.

I found out something interesting, somewhere along this journey, which helped me quite a lot. I was 4 years to diagnosis, and quite distressed through much of the diagnostic journey/oddessy, I just didn't cope well with the uncertainty and not being heard, and some truly rubbish things happened along the way too. And, I was telling people I knew well that it was hard (obviously most people got "I'm fine thanks"). They just couldn't cope with me, it was too difficult for them, so they evaporated. Depending on the person they either avoided me, ghosted me, fell out with me, or 'gave me some space' (the posh ones!).

This may not be what's happening with you, but it was such a monumental lesson for me, and I suppose your post reminded me of my experience, and seemed a good place to share it. Please don't take it as a criticism...

So, the helpful thing I found out is about 'illness narratives'. It's a subject at the overlap of psychology, medicine, spirituality and the arts. Turns out there are three main narratives. (I think I have their names right)

*Restoration - I was well, I am ill, I will be well again

*Redemption - I am ill, but the illness is making me a better person (kinder, more generous etc)

*Chaos - this is awful, I have no idea what's going to happen, I'll never be well, I hate it, I've lost so much, I'm angry, why can't they work out what's wrong.

Now I know (learnt the hard way) that people (apart from a very precious few) can only listen to Redemption or Restoration. Or talk about the weather. And we, with our chaos narratives, remind them that their life might go wrong, that we all stand on the edge of the abyss, that being human can be really hard, and painful.

I don't agree with this, but have found it a fact, that you have to parcel up your illness in a way people can cope with, and it's our job to hold their hand and be kind to them. Or withdraw. I spend a lot of time on my own and I'm quite happy quiet and pottering. Then when I do see people I can be more generous when they say things like... "I'm sure you could walk through the town park if you really tried". .. Or even the dreaded... "You look well". Aaaargh! If I'm rested I can be kind and say things like "Thank you, that's very kind of you to say". If I'm rested I can smile at them too, and be kind. So I've come to see quiet time on my own as a sort of ballast or anchorage.

Like I said, this was an opportunity for me to share this life-lesson, please don't take it as me saying you are doing the wrong things. It's hard for the people around you too. They don't cope well. Running off keeps them in their comfort zone. I truly feel your pain. Many people here will too. If you can let those people go (for now), and stick with people who are good for you to be around, that will help. People on here are good to be with, and you can interact just as much as you can/want. You have to conserve energy, you have to prioritise yourself now.

Sent with much love.

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Extremely well put! What I found is I had some acquaintances who were very helpful, stuck by me and became better friends and previous friends dropped off because I didn’t have the energy ( or inclination) to keep up with them. Fortunately I’m a bit Iike Sam and enjoy my own company. The way I view it is my life has changed drastically and therefore the people in my old circle of friends may no longer share the same interests. Many years ago someone explained to me that friendships often change when we get married, have babies (or not) as it is often what we have in common what draws us to another person as a friend.

It is a very deep and meaningful subject - just my thoughts. Lesley.

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Thank yo. It is a difficult subject that's for sure. I suppose it must be true that sickness is hard for people to deal with since they really don't have to. I would walk away if I could. I know the line about ....finding a new normal ..... and all the inspirational type quotes about letting go of what we can't control ....but .... nothing prepared me for this type of loss and sadness. I lost my daughter 18 years ago and that was the most awful thing ever in the world ..... but totally different.....this makes me feel small and stupid and childish and weak and pathetic and needy and old and uninteresting and boring and semi helpless and tied to the whole nasty anchor and I cannot find any way to free myself .....I think it is just that I have to find myself now and I probably can. I think and hope I can feel better soon ... probably not physically but emotionally.

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"this makes me feel small and stupid and childish and weak and pathetic and needy and old and uninteresting and boring and semi helpless and tied to the whole nasty anchor and I cannot find any way to free myself ...."

Yes! Yes! Yes! Yes! Yes!

I feel all this too! I honestly wonder how I used to hold a conversation socially. I was out with a group of friends (my boyfriend's friends really) and I struggled with making conversation. Reflecting back on who I used to be, I don't recall how I used to do this simple social function. And my mind wandered off to all those bad feelings you mentioned.

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Can I ask your michichgo..... what is your story?

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I’ve found I’ve just had to settle into a new role and not fight it - telling myself if will all pan out. I’ve found I’m a lot more at ease with this new attitude. So sorry to hear about your daughter! I whinge and say ‘ why me’ and then hear about other tragedies and situations and tell myself to be more grateful. Keep in touch, even through private messaging if you like.

Cl

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Thank you Sam and everyone else who shared their thoughts. I'm afraid I posted at a very low time and I was very sad..... I appreciate your explanation and I will reread it often to try to have a better attitude

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Simply want to thank you for your post.

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I agree with everything you said - my same experience since dealing with this illness, which hit me hard last December, nearly a year ago. My best friend even struggled to "be there" for me emotionally. She could visit me in the hospital just fine, but her job demanded so much of her that she could not be the one I would lean on if I was struggling. So, guess "who" was there? My Lord, first of all, then this group and the Vasculitis Foundation support groups on Facebook also - what a great, great help. You all understand! So, that has helped so much.

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Shows what some people want from you!! And what Some consider friendship really is?

Been there and I am much more selective for friendship rather than being there to fulfill others needs or conversations.😁

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I'm glad you posted on this site, Cathywp, away from the sight of friends and family. I have felt every single emotion you described. This disease is incredibly difficult to manage; both physically and mentally. We spend so much time focused on our physical well-being and survival that we forget the emotional toll this disease demands of us.

I've battled with MPA for five years and it wasn't until recently that I found myself having to attend to the state of depression that had settled onto me, much like a heavy blanket. Although I see nine different specialists, I decided to add a psychiatrist and behavioral therapist to my list of physicians. This proved to be the wisest decision I've made, in years.

My former life is no longer attainable but I am learning to accept and appreciate my reformed life, health and relationships. I certainly am not proud of the mean-spirited thoughts and ugly emotions that still surface. (I want to travel. I want to stay out late. I want to go dancing. I want xxxxxx. I wish I could xxxxx. Why can't I xxxxx.) So much has gone: my health; my many friends; my career; financial security; energy; fashion sense; yada yada yada.

But now, I'm training my mind to be quieter. I've joined a gentle yoga class where I'm the youngest member (by decades) and I'm working on meditation. Having lost so many really close friendships, I've learned to be a kinder person and, I hope, a better friend to those who've remained by my side.

Strangely, you--a total stranger to me--knows my suffering. Shifting our hurt towards understanding and love is terribly difficult. I'm sorry you're on this journey but I'm thankful and happy that I'm not alone.

Be well. God bless.

Michele

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Hey where did you get that smile cookie in your photo?

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It's one of my favorite self portraits!! I purchased it at an outdoor summer market in downtown Chicago, Illinois. (I recall it's absolute deliciousness!!!)

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My life has changed too! I just do what I can & stopped beating myself up for what I can’t. I hope you can adjust- your friends are uneasy because they don’t want you to overdo it! They don’t understand this disease either so don’t be so hard on them. They think it’s easier to not invite you I guess but they are still your friends! Try to keep your chin up! 💜

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Thank you danerd. Of course I am sure you are right and my friends are still my friends and i know that I must stop making it all about me. It is just so difficult to adjust. I have been lucky to have been blessed with a strong determination that has served me very well throughout my life. I have been able to achieve pretty much whatever I set out to do and I am proud to feel that in spite of many obstacles I have made my life be fantastic. I am just a little lost now. I cannot fix this or even change it and I guess I am somewhat panicked. I will try to slow down and see what the tide brings in.

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I also did the same! I was an aircraft mechanic who worked her way up to a production supervisor- after 18 yeats I wanted something different and left for a job as a crane operator in a steel mill! It was always so satisfying to accomplish things others thought I couldn’t! When my Wegner’s showed up nobody could help. I felt so alone & wanted to die but God wouldn’t let me. I got a lot done this spring before I had a flare! I repainted my screened in porch so when I get down I sit out there as it is my oasis! You will still accomplish much- just in segments! 💜

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Thank you. It is nice to know I'm not alone and many others are tackling the same issues. I was just giving in to ......feeling sorry for myself I guess. I know it will all come together somehow

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It’s ok to feel sorry for yourself!! Hugs!!!

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Something similar happened to me. I had two particularly close 'friends' who couldn't cope with my illness. We were very close (or so I thought) and did everything together and saw each other almost daily. One just silently withdrew from my life and the other started displaying irritation that I was actually talking about my illness (which is what you do with friends?). I made particularly sure I wasn't boring her with my illness. Eventually I backed off from her as I couldn't cope with her self absorption as well as what was happening to me. I just mentally didn't have the head space or the physical stamina. I was bereft and each time anyone asked me about them I would dissolve into floods of tears. To have your health destroyed, your friends abandon you, your relationship undergo a total upheaval and lose your job all virtually within a short period of time is more than devastating and seriously messes with your mind. Fast forward to now....and I too have learned to dig deep within myself and actually enjoy my own company (Just as well really!). I've also learned to be more tolerant of other people, more accepting of my lot in life and I no longer 'sweat the small stuff'. So, the lessons we learn in life are sometimes the harshest but maybe we needed to learn them? Who knows? Anyway, I'm doing fine; oh and by the way, I now have new (and nicer) friends!

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Thank you pudding. I m glad you have new nice friends. It seems so odd to me that the topic of our friends is sooo important and yet taboo. I have a friend who told me two years ago....."you know cathy people may ask how you are doing but they really don't want to know and they really don't want to hear about it....." that comment seemed like it had to be wrong but now I believe she was very accurate. Even my own mother will listen for a few minutes and then she says "let's talk about something else". I am learning. I just don't have the energy to waste on playacting so it is becoming better if I just don't try to be a part of the group that I used to be part of. And, I do see the wisdom and peace in being ok with keeping myself company. Funny though....I think it used to be a luxury to get to spend quiet time alone back in the young busy days of raising kids and paying bills and running a career and a house. And then it was like a gift to oneself. I guess now the gift should be letting myself be ok with it.sorry I'm getting all philosophical ! Yikes

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I, too, have discovered that gift of enjoying time alone. We don't actually have a lot of energy to do something for very long anyway. But, I still do voluntarily participate when I can, taking my own care so I can leave early. And I tell myself I will only talk about my illness very briefly so "they" are updated, then say something like, "Good, now that's over and let's have fun!" That seems to be working. I sure don't want to be a drag. I have also periodically made the comment that this is not contagious.

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I like the not contagious comment!

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Look at what your post has done Cathy, given us all space to tell our stories. I'm quite shocked how similar they are. I think I'm going to start a thread where people can put the very best examples of friendship... The nicest and most useful things people have said and done while we were sick. That's got to be worth documenting too.

Thank you for putting your story and bringing us together. X

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That's a great idea sammy

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I've set one off, let's see what comes in...

healthunlocked.com/vasculit...

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How do we find it sami

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I put the link in the post... It clicks through OK on mine, does it work on yours?

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