The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Feeling guilty for the way i've handled the illness

Discussion in 'General ME/CFS Discussion' started by lemonworld, Mar 28, 2015.

  1. lemonworld

    lemonworld

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    I've been sick for seven years now, i got sick when i was 14, not understandig what was happening to me, the doctors telling me to get my ass back in school and everything would be fine. For the last seven years I've streched myself so thin, trying to do what was expected of me, trying to hide the illness and act normal (and always failing), always hoping that tomorrow it will be gone. Never listening to my body and never taking care of myself the way i should. and I believe it has affected my personality/the way i act and handle situations greatly.

    basicly I've been an emotional wreck, not knowing what to trust or what to believe. and always desperate to get healthy, desperate to find someone who believes me and scared that the illness was my own fault.

    these last few months i've finally started to accept the illness, and i've been learning alot about myself and trying to handle it better. And now i feel so utterly ashamed of how I've handeled it in the past. I know it's not really fair to be so hard on my self, but I can't help but feel I should have done better. I feel like I've relied too much on the people around me for emotional support. sometimes I've said things that have been really dark and depressing, like 'I wish I could die' (not meaning I was suicidal, just that in that moment I couldn't bare another day with this illness).

    i know the people in my life care about me, but I still have this heavy guilt for having them go through this stage of my life with me.

    can anybody relate? how do you handle this?
    have you had periods where you've been emotional unstable or very unrational? as in making desitions that really doesn't make any sense?
    how do you forgive yourself and move on?
     
    Last edited: Mar 28, 2015
  2. WoolPippi

    WoolPippi Senior Member

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    I have few answers.

    I do have a hug for you:
    (((You)))
     
  3. AndyPandy

    AndyPandy Making the most of it

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    @lemonworld I can't imagine how I would have coped with this illness if I was sick from the age of 14. I just wouldn't have had the emotional skills to deal with it.

    You have done the best you can - an amazing job under such difficult conditions. People more than twice your age struggle to cope with this illness.

    With hindsight, there are many things I would change in how I managed this illness in the early stages, but at the time, I didn't know any better and did my best just to survive.

    I try to look back, reflect, learn from the past, find new ways for the future and move on. It uses up too much of my energy getting stuck feeling guilty or wishing I had done things differently.

    One thing is certain. I will continue to make mistakes, upset people, try things that don't work, get sad, disappointed and angry about my situation etc. For me, this is part of living a real and imperfect life with a chronic illness.

    I understand the sense of desperation. Many on PR would have felt this. Why wouldn't you feel desperate to get better and be believed?

    I too reflect on what I might have done to cause this illness. There are a few things I would do differently if I had my time over, but I knew nothing of this illness, its causes, my genetics, my limitations. And we can't change the past, can we?

    I hope you have someone there to talk to who understands. I hope you can be kind to yourself. You deserve it.

    Sending you love and encouragement.
     
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  4. rosamary

    rosamary Senior Member

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    It sounds as though you are coming to terms with things. And you've had a terrible time.

    But WHY feel guilty just because you have behaved in an understandable way due to an illness? That's just silly. FORGIVE YOURSELF.

    And go forward without the guilt.

    People obviously care about you very much indeed.

    But you were just a child when this kicked off.

    So let all those bad feelings go and focus on the future.
     
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  5. alex3619

    alex3619 Senior Member

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  6. daisybell

    daisybell Senior Member

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    Welcome to the forum @lemonworld
    It doesn't sound to me like you have anything to feel guilty over....you have been trying to deal with being ill in the way that others have expected you to, in a period of life that is always a challenge anyway!
    I think most of us, if not all of us, can relate to the feelings of desperation. I get those when I have a crash or feel particularly unwell.... Sometimes I can deal with them, and sometimes I express them in a way that isn't good for others!! But.... I try my best, and you can't do more than that. :hug:
     
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  7. L'engle

    L'engle moogle

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    Welcome! I think many of us go through theses things. I got sick when I was 19 and I know if I had not had my health a a teenager life would have been much more difficult. I would read around on the forum, especially other's threads about how their lives have been and it will help you. Even though many are a lot older the similarity of experience makes it easier to relate across ages. Sorry you have to be here so young!

    As well when you go through years of not having your illness recognized and the people around you are giving you guilt it is hard not to internalize that. For myself I think I felt (not consciously but on some level) that if I was even tougher on myself than other people were I would somehow be more in control. They say we are our own worst critics but as a person with ME/CFS the outside world is very very tough on us and we often adapt that harsh criticism into our own self treatment. It would be hard not to when surrounded by disbelief and strong social sanctioning.

    This should get easier as you move into the phase of accepting and guiding the others around you to accepting your condition. (No easy task!)

    Don't feel a need to reply individually, there is so much for you to take in :)
    I hope you can feel welcome and safe in the community here.
     
    Last edited: Mar 28, 2015
  8. Debbie23

    Debbie23 Senior Member

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    Bless you, I can relate. I was diagnosed at 13 but think I was suffering with ME from as far back as me being seven, and I think that while I would have had ME I doubt I would have been totally bed bound, in a wheelchair etc. had I not pushed myself to go to high school and had stayed home educated. I get very angry about choices I made like that. I do wonder that had I 'owned' my illness a lot earlier on whether I would be better now rather than still mainly bed bound and totally reliant on other people and a wheelchair fourteen years on.

    But they are gone, and getting angry about what I did then just wastes more energy right now. You can't change what you did. you made choices which seemed to be the right ones at the time based on what you knew right then in that minute. You know more now, which shows you why the choices you made weren't the right ones, but you can't be angry at yourself for knowing less back then, because you didn't know any better then in that moment when you made those choices. If that makes any sort of sense! What I mean is I think you need to be kinder to yourself, a lesson I'm still trying to learn for myself as well!

    I do have times now when I get very frustrated and angry and will wonder if all I do need to get better is push myself harder and do more. I had a wobble this week where I really resented myself that I can't just 'try harder' to get well, but the times when I have those irrational thoughts last for a lot less time than they used to, because reading and learning from here and personal experience, rationally I know it's rubbish because I'd be better by now if all we needed was to try! All of us would be!

    Educating yourself about your illness is empowering, but education about anything is a process it takes time and experience, and often mistakes which you learn from. I don't see why you need to forgive yourself, you didn't do anything wrong you were learning! You remind me of my own journey but you are already doing better than me, it was only in this past year and mainly through finding PR that I have come to a place of peace and acceptance. I can't wait to be better, don't get me wrong! But that won't come from being in denial and railing against my limitations which only does more damage, and while I learn to manage right now I am content. So look at how well have done to come so far already. Confronting these types of feelings takes courage and That's real strength in you and you should feel proud of that imo.

    I also understand totally how you feel about leaning on people. Having been very severely affected I've needed full time round the clock nursing just to keep me alive in the past and still need full care now. My mum and my sister have nursed me, but especially my mum. And I to have said things to my mum when I was first so horrifically ill that I wanted to die, because it felt unbearable but those times pass, and things like that can heal. I will never be able to repay what she's done for me but as I've grown older I've come to realise that love of the kind that causes people to do these types of things doesn't come with a price tag. And my mum has always said to me that what I can't do practically I give back to the family emotionally, I contribute in my own way and I'm sure you do as well! And what you give back to your family in your own way will be equally priceless, I'm sure.

    Bless you sweetheart, I do hope things get better for you soon, emotionally at least, even if they are limited practically. In the meantime one of the best sources of healing I have found is here on this board. :hug:

    And hopefully this isn't clumsy, and makes sense, not very good today! :)
     
  9. MCRobbie

    MCRobbie Senior Member

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    @lemonworld, if I was as sweet and caring, and as thoughtful and considerate and articulate as you clearly are at your age with or without CFS I would have considered myself blessed in hindsight. From hearing you speak, I think many of the people who are in your life are blessed to have YOU in theirs, both now and in the future, though it may not always be easy to see this. In looking at my own life and the challenges that my illness imposed on my relationships I am reminded of the parable which I cannot fully remember of the two stones rubbing against each other in a stream bed, the friction of their constant intermingling side by side causing the surface of each to be polished. Looking back I can see how some of the challenges that my illness imposed on others caused them to grow in difficult but in the end positive ways. Don't always assume that the difficulties your illness seem to impose on others doesn't somehow have a more complex and nuanced effect on them which in the end can bring something positive. And I agree with Debbie that you in time need to be kinder to yourself. This illness does indeed impact our thoughts, our moods, our behaviors and our very personalities. This is a fact that it took me years to fully see and understand. You are already way ahead of the game in your concern for others and in your maturity and intelligence. If only I could have been so thoughtful at your age! Be kinder to yourself as Debbie says. Its clear you have a bright future whether CFS continues to come along with you or not. Don't give up hope. Wishing you well on your journey.
     
    Last edited: Mar 28, 2015
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  10. Kati

    Kati Patient in training

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    Welcome to the forums @lemonworld. Know you are in very good company here.

    You cannot erase the past, and I bet you have done as best as you could.
     
  11. Beyond

    Beyond Juice Me Up, Scotty!!!

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    The only people that should feel guilty in a morally sane world would be those that insisted in you faking your health status to satisfy their religious belief in somatization or hypochondria and pushing us all the time to live a life only suited for the healthy with the result of either increased illness or non-improvement over the years.

    For me in that aspect it´s all about forgiving the others. Although I would say "letting go" instead of forgiving, I don´t feel like forgiving anything.
     
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  12. Daffodil

    Daffodil Senior Member

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    ohhh this is no reason to feel guilty AT ALL! this is a situation beyond your control. I am surprised you are angry at yourself and not at others, as I have been lol that is a testament to how good of a person you are.
     
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  13. Amaya2014

    Amaya2014 Senior Member

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    Beautifully written and said @lemonworld. Since becoming ill I've said several times how is it that me with a masters degree and always an honor graduate could feel like I would have barely made it through high school (if at all) with CFS/ME/SEID? Thank you for your honesty and I second the others that what you've experienced is normal. I believe the grief process is more circular than linear (check out Kubler-Ross grief stages when you get a chance and maybe some of the points may resonate with you).

    Having lost my mother at an early age and not having a relationship with my father until late in life, I've been independent for a long time. I can't relate well to having to rely on others and to be honest it's a huge and difficult adjustment. Yet, some would argue that interdependence is a better state spiritually than independence. (Ummm...I'm a work in progress then...lol).

    I hope you can see this video link but if not try: YouTube Dick and Rick Hoyt. Every time I saw it when healthy I always wanted to be that person who was strong and noble enough to care for someone else. As I've come to accept being the "ill" one, part of accepting this illness is understanding that I can never predict what my struggles will inspire in another. Yes, we are often faced with those who don't get it, but there are those who do get it. I like to believe the shared experience of chronic illness brings more humility and gratitude for life and the freedom to come and go as you please. I also think it inspires hope when others see how strong the human spirit can be in the face of adversity.


    As far as guilt, that's a very personal road. If it helps any, whether sick or well, everyone has a laundry list of things they wished they hadn't said or done (especially going through the teenage years). The words of Dr. Maya Angelou has helped me best with this, "When you know better, do better beloved".

    I don't know your family and friends but I'll go out on a limb and guess that they see you as a beautiful addition in their lives and are glad to be in yours. Definitely, I can say that many here, like myself, appreciate your presence in our community. I can think of no better words in closing other than Namaste :)
     
    Last edited: Mar 29, 2015
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  14. lemonworld

    lemonworld

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    Wow, guys, you beautiful, strong people, I am so grateful and amazed by the love and support you have given me! I wish i could give each one of you big hug.

    Yesterday I was feeling so lost and confused and now I'm growing stronger and more calm. THANK YOUUU!

    It always helps to get other perspectives on my feelings and thougts, since I'm often alone with them and they start to repeat themself and begin to seem true, even if they are unrational.

    we do try our best in any given situation, with the knowledge we have. It doesnt make sense to beat myself up, for not knowing the things I know now.

    I have a lot of new ideas and thoughts to work through now, like accepting that i don't know everything and will continue to make mistakes, and accepting that I sometimes have to lean on other people.

    After reading your replies, and watching that video, I'm thinking that leaning on other people and helping one another is one of the greatest gifts we have as humans, and therefore, to be helped is a beauiful thing too.

    I think i'm going to make this place my home, what a lovely place for learining and supporting!!
     
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  15. lemonworld

    lemonworld

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    This amazes me! It totally shifted my perspective. I need to remember that it's not just me that has the opportunity to grow with this illness. And to inspire growth in my family and friends is such a beauitful thing, I think I can live with that.

    And it also makes me wonder why I think the people in my life wouldn't be able to handle my heavy emotions. They are after all strong and caring people. *need to remember that we are in this life TOGETHER*
     
  16. Misfit Toy

    Misfit Toy Senior Member

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    Lemon, I became sick when I was 18 and I struggled to keep up with my once well world. I never feel guilty for that because you were so young and I was so young and what did we know. I had never been sick like this and then I came down with a virus and that was it and it was so hard for me to understand that a virus could actually knock the life out of me.

    I didn't even know what an adrenal gland was when I was told I had adrenal problems and I was 18.

    I think you have to cut yourself some slack for becoming so sick at such a young age. I never feel guilty for what I didn't know or how I handle things because when you're that young it's hard to handle a lot of things.

    I have said things also like I want to die. I don't feel guilty. It's how I felt. This is a terrible disease. Most people in my life know that I really don't want to die but that I just don't want to live like this and they understand.
     
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  17. Revel

    Revel Senior Member

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    Hello @lemonworld, and welcome!

    Like you, I became ill as a child. The first time I was so ill that I was admitted to the children's cancer ward for 2 months. Nobody had a clue what was wrong or how to treat me. When I relapsed some time later, after being forced to attend school and behave as a normal teenager should, my GP sent me straight to the adolescent wing of the local mental hospital. Neither situation was appropriate care.

    I was very angry at my parents for allowing this to happen. It took me a good few years to realize that they were just doing what they thought was best, what they were told to do by inept doctors and psychiatrists. I have long since forgiven them.

    Remember that at the beginning of your illness, you were a minor. You had very limited control over your circumstances. Now you are older, and no doubt far better informed than ever before.

    It is perfectly normal to feel the emotions and thoughts that you are experiencing, so be kind to yourself. Your life has taken an unexpected detour from the planned route and some careful recalculating is required to find a new path.

    With time, I hope that you will be able to draw a line under the past and concentrate on being the best health advocate for yourself that you can be.

    As Maya Angelou said: "I did then what I knew how to do. Now that I know better, I do better".
     
    Last edited: Mar 29, 2015
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  18. alex3619

    alex3619 Senior Member

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    Very wise words.
     
  19. Richie

    Richie Senior Member

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    You have to cut yourself some slack when your young as Toy says, even more when your young and unwell.
    Ill people bear a double burden - the burden of illness while being ill,. so don't give yourself too much stick especially at your age.

    Anyway you won't make yourself any better by giving yourself trouble, so whatever the monkey on your back is telling you you're under higher orders not to.
     
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  20. redrachel76

    redrachel76 Senior Member

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    I got ill at 15.

    I can relate to nearly every sentence you wrote.
    I think there is something uniquely difficult about getting it at 14-17 that people who get it older don't suffer. (Not that it is easy for them.)

    That was exactly the same for me.
    Ill at 15, was at school till 19. Only did 1/3 of my A-levels (I was born and grew up in England). I was stupid enough to force myself on.

    I can definitely relate and have made the same mistakes and have forgiven myself because I realize how hard it is to deal with this.
     
    Last edited: Mar 30, 2015
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