The Cycle & Struggles of Grief and Acceptance

One of the things that I am really struggling with in this whole thing is guilt! It is a false guilt, I know that, but none the less, it is there … not a lot and not all the time … but some of the things that people tell me leave me struggling with guilt… Let me explain:

Unless you have been living under a rock for the last few decades, you have probably heard of the five stages of grief. I think that it is a very fascinating and helpful model, and when I looked it up just now instead of relying on my memory from my long ago Psych 101 days, I was surprised to see how inconsistent it has become! How in some cases it has been extended to include seven stages not five, how the wording for some of the stages is different and that even two of the stages are as commonly found one way around as the other (steps 3 &4)! But for the purposes here, this is what it looks like in it’s basic form:

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Some people only understand this process in the context of healthily going through the different stages of grief over loss of a loved one, but it is also used when dealing with everything from divorce, job losses, all kinds of major negative life changes and events. And on the whole, I have no doubt that it is very accurate. But I think that people forget that it is a PROCESS, and that processes take time. I think that people also feel uncomfortable around someone who is angry, depressed, in shock, has anxiety, and that most of them don’t know how to help, or what to say! And so we don’t like people very much in the first four stages, or certainly don’t know what to say to them…

Peace and acceptance are WAAAY easier places to be, than the first four stages, both for and in ourselves, and for others to be around. We all want everyone to be in peace right? For those of us who have journeyed through that process however, we know how difficult it is, and that when we eventually reach the end, we wish that we had gone through faster, easier, had not fought it when we did, and so we encourage others to get there faster as well… even when we have journeyed ourselves, you would think that those people would the most understanding but sadly sometimes they aren’t.

As I started out saying, one of the things that I am struggling with, is that people want me to be there at the end, at number five, … round about …. NOW! And when they speak about it, I FEEL as if there is something wrong with me, that I should be feeling guilty! Guilty that I am not being more thankful, … guilty that I am not more appreciative, … guilty that I am not THERE yet! But what does THERE look like? What does Peace and Acceptance look like? I think that for some people, it will look like I am in a place where I can only say things like:

Well at least I have a husband and children …

Well at least I have people to help and support me…

Well at least I am not dirt poor…

Well I could be sooo much worse off than this! … 

Look at all the suffering in the world that is worse than this..

My chin is up, I’m making the most of it, and there is no point in wallowing….

If I am THERE, at that place, then they can feel good about me, they won’t feel uncomfortable anymore and we can avoid the real issues for me, and pretend and be whole, and no one will feel embarrassed!

But the truth is, and I am sure that this won’t be news to most of you when you think it through, that stage five is only an end goal, and it is a looong way to get there! And I am sure that most people realise in theory, that the journey is rarely as clear cut as that, and that it is not just a straight arrow from one thing to the next. That in reality the journey it is actually a zoo! Life is chaotic, and hurts a ton, and emotions like Anger, Anxiety, Despair and Depression are not just words or even feelings, they are and can be, consuming emotions! When in them people often can’t have a decent conversation, can’t wear a mask to pretend that all is OK, and are not emotionally robust enough to cope with having to carry those around them, at a time when they need those around to carry THEM! If any of you have suffered from even the shortest bout of depression, you will know that being told to keep your “chin up” is not a kind or helpful thing to say at all!

But why not? What is wrong with saying “chin up!”? Isn’t that an encouragement? The truth is that it isn’t. If one could climb out of despair that easily, believe me, most people would! The message that it sends when we say this is that the person giving such advice is making light of a deeply difficult situation, that they think that you SHOULD be able to pull yourself out, and should do so immediately… it tells the person in crisis that they have no right to feel the way that they do, and that they need to get over themselves. I am not saying that there isn’t a time and place for helping people out of a wallowing mess that they perhaps cannot get out of themselves, or are staying in for waaaay beyond their welcome, but those are outside situations.

The process of grief is complicated and painfully slow! It has pitfalls and snares, good days and bad, hard earned progressions to the next phase and then triggers that send them plummeting back to the beginning … There is no set time frame other than for the fact that if one whizzes through them too fast, then they are not processed healthily or well, or deeply. There is a reason that this process is called a healthy one and there is a reason that it has been added to and filled out over time, and has been drawn in all kinds of different ways from wheels to bubbles to flow charts, and each one is slightly different!

The fastest HEALTHY way for anyone to progress through the stages, is for them to be allowed and encouraged to BE in each one, … and be there fully, whole heartedly, wholesomely, safely, and not alone! The greatest gift that you can give someone in grief, is to SIT WITH them in where ever they are at! To affirm them, to hold them, and to let them just BE. You don’t have to know the right words, you don’t even have to know ANY words! They certainly don’t know the right words either… but if you can see people where they are at, and allow them to whole heartedly be there with no guilt, then that is greatest love gift that you can ever give them!

I am not saying that it won’t be costly to you. Have you ever held anyone who is so sick or crying but your arm goes numb or your legs feel like they will fall off, but you don’t want to drop them or unsettle them so you stay like that and suffer in silence? Sometimes it feels like that to be with someone at their point of need … it can be numbing, and boring, and hard, and even painful, and sometimes it takes all your emotional energy from you, and when you go home you may need some TLC yourself! But it is a fabulous, wonderful, loving gift!

On the other hand, the way to isolate them, make them feel unseen and unheard, and to set them back over and over again, is to speak to them as though they should be at the end already. At the end in that nice, SAFE, non costly, comfortable, place where no one is short for words, everything is encouraging, you don’t have to face your own mortality or circumstance, and you can disappear whenever you need to… where YOU feel good, but they only feel guilt for not being where they are being told they should already be!

AT best on a good day it hurts when I feel that people say things that belong only in that safe end space, and aren’t able to see me where I am at, or to ask me how I am and mean it. On a bad day there is no reserve to cope with the guilt and the hurt. not to mention that a bad day means that I am also in huge physical pain, and/or that I am struggling with set backs, not enough spoons, things that go wrong and I don’t have the physical capacity that I once had to be able to simply fix it. Sometimes it is the brain fog that I am struggling with and can’t find my words, and others it is I can’t remember anything or find anything. Sometimes it is “simply” a mouth full of raw ulcers which mean that everything hurts to eat and everything hurts to say, and all I want to do is climb up into a ball and sleep … if only I could!

In the context of grief and acceptance, a Chronic Condition diagnosis often goes like this:

Life as you it is “normal” (whatever your normal might have been)…..

Something changes, either in a flash (like an accident, a bite, a sudden illness) or over a period of time (for example when symptoms creep up on you)….

You are accessed, tested, worked on….

Now suddenly life is completely, irretrievably, miserably, different. It is the beginning of a new path for sure, but WAY before that, long before you can start to process the new, it is also the end of the path that you were already travelling…

In that moment, when you look forward, the process of the five (or seven or whatever) stages begins. There is the shock and the denial and so on and so on it goes. It isn’t an overnight thing. Even with professional help they don’t deal with Shock and Denial  this week then your homework by next week is to be ready for Anger and Anxiety! It is SLOOOOOW! In my own observations, when it is a major life changing event, it is impossible for the entire process to happen in under a year. The first year of losing someone, or losing your health, or losing your job, or getting divorced, is what I call a year of firsts. A year of anniversaries, and major grief. I have watched people make amazing progress, and then a family birthday hits and they go speeding backwards. Anniversary triggers are literally a nightmare! This birthday we are without them, last birthday we were so happy … or I could still walk last Christmas, but now I no longer can or I wasn’t in hospital last Easter … etc etc. … and then you get through an entire year, one anniversary after the next, and then you start the anniversaries of the loss and a whole new and different wave of triggers approach: this time last year we were in the hospital, or trying to find money for the bills, or preparing a funeral, or … or… or…

It is a process, and it is slow, and it is uncomfortable and it is hard! There is no perfect formula, there are no short cuts, and expecting or even hoping for people to jump immediately to the end, makes it even harder for them than it needs to be. There are a ton of diagrams for how the grieving process should go, and they are a great guide, but no one can push them.

I drew the following diagram for what my journey through the process feels like for me. Mine is even more complicated because diagnosis was not so simple for me, and people in general are not tolerant of people in pain for “no reason”. People get bored of people not pulling themselves together and frustrated with people lagging behind. So I shut up and put up with it for decades. SO when diagnosis came , at the same time as there is shock and denial, there is also a huge sense of relief! It came with a peace and acceptance that is different to the one that is reached only after going the hard yards of the other steps along the way.. It isn’t better, and it isn’t worse. It is simply different. Lots of people have suggested that there must be some peace around knowing what is wrong at last and there is! But it in no way diminishes the effects on my body, my soul, the outcome… and it doesn’t make any of the other steps any less real or present! One of the losses that I am facing is that for all the pain that I have suffered, there has always been hope. I still have hope, but it is a very different kind of hope, and I still need to process and grieve and work through the loss of the hope that when this or that injury heals I will be pain free and healthy and fine!

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Just because I was able to “jump the queue” and get to peace in those first days, doesn’t take anything from the despair that I feel on so many days over the past few decades and the despair that I feel now for the future! I don’t remember what all the carpets look like in every house that we have ever lived in, but if I close my eyes I can tell you exactly what they feel like! If I close my eyes and think of each house, I can think of so many days of me lying on the lounge or dining room or even kitchen floor, curled up in agony and unable to move! Days where I have worked through all the pain in order to get the children to school, husband to work, made sure that the washing is done and clothes hung out to dry, so that if tomorrow I can’t cope or the next day is even worse, as least the basics are done, but now I have pushed myself way too far and I have hit a MAJOR wall! Or some doctor or other might have some crazy idea of what would make me better and my stomach is cramping from meds that do nothing and my stomach can’t cope with them, or the side effects or simple exhaustion.

I need support and space to work through this process, and in many ways I feel strong and robust both emotionally and physically, but on many days I simply have NOTHING! last week I spent so much time with appointments that I had no reserves, nothing to give, and I was extremely fragile and REALLY struggling. But I don’t feel safe to say anything because I don’t have the capacity to cope with the responses that imply that I should be in Peace and Acceptance already.

Again, I KNOW that people mean well, but if relationships are going survive this, then I need to be honest, and I need space and freedom to be ME and be where ever in the process I happen to be on that day. From all the friends that I know who have experienced serious loss, I am not sure that one ever gets to be permanently, wholly, “never go back” IN that last phase. I think that they get to be there MORE than they ever did before, and I think that they become “permanent residences” of that space, but that they all have and always will have, some bad days, some sad days, some triggers and some set backs.

My diagnosis will not define me, and I will continue to make a difference, I will continue to fight for awareness for EDS, and to do many of the things that I always have done, but there are lots of things that I will never be able to do again, and right now I am in an incredibly tiring and frustrating part of my journey, and there will always be bad days, and while I am working HARD at make the best of things and more, and am working hard on preserving my strengths and my body, short of a miracle my health will only ever get worse and things will get harder and slower and more and more frustrating.

So if you know me and love me, then please give me permission to BE where ever I am in my journey, and give me the support and encouragement that I need every step of the way, instead of wishing, pushing, suggesting, hinting, that in your humble opinion, I should have moved on by now, should be thankful for small mercies, should should should … but the truth is I am often not…


5 thoughts on “The Cycle & Struggles of Grief and Acceptance

  1. I feel your emotions.♡♡♡ I appreciate what you are saying. So hard to be so alone in struggling to be and maybe someday, stay, in peace and acceptance. How does one accept defeat?


    1. Thank you 🙂
      Defeat is such a fascinating word, I need to think on that …. maybe write a whole post! In our wheelchair shopping one of the things that my husband and I have been thinking is that if we buy a wheelchair, we are giving in! Is that defeat, or is it simply knowing and accepting that a battle to do life how WE would like to do life, or how we used to do life, or how others around us appear to do their lives, is simply not going to happen? I am not there myself yet and have a long way to go, but I sense that for me it will about changing my goals and learning to stop making expectations on myself that are no longer good for me? It’s a tough one… and I suspect that I will never fully get there this side of Heaven! But I hope that I can get there enough that I don’t ruin the things that ARE available to me. Again with the wheelchair example, we were reminded by a friend right now, to think of the wheel chair less about a disability aid and more as a “golf cart”. I already use the ones provided at shopping centres and airports instead of struggling along on my crutches and slowing everyone down. When I be “brave” and don’t use one, then I keep have to the whole trip as short as possible, and miss the four shops that I would have loved to have gone to and browse, but ran out of spoons and my shoulders and hips can’t go any further… and I frustrate everyone, and can’t carry anything … so accepting defeat and using a wheelchair is better for all of us on the day AND it helps to preserve my body long term… But of course not all “defeat” has an up side … some outcomes just simply suck … no up side, no better way, no middle ground … and it simply isn’t fair! I think that in those cases acknowledging that is half the battle, instead of pretending that is it actually OK when it’s not! … now I’m rambling .. thanks for your feedback! 🙂 xx


  2. Defeat is a provocative word. I apoligize. Your description of how you deal with mobility is so familiar except I cannot use crutches, I cannot tolerate the strain they cause. I purchased my wheelchair several years ago and thank goodness it sits in the garage with a tarp over it. I know it’s there but I haven’t reached the point of needing it all the time. I do sometimes borrow chairs when I go shopping but usually if I have a cart to lean on, I can manage. I do have a lightweight and small portable stool that my husband will carry so when I need a break, I can take it without having to sit on the ground. We use that for places where seating is not available. Maybe this is normal, but I find I can tolerate walking on the ground much better than walking on hard floors. I can tolerate a walk on the forest floor much better than a walk on concrete. For me, the worst thing is standing in one place. I become extremely uncomfortable and my right leg will start burning and feeling numb.
    It is frustrating enough that we have to deal with our mobility constraints but it is another matter when we feel like we are restrictions on the mobility of family and friends. I feel like I am slowing them up or keeping them from fully enjoying themselves and then I feel like a burden. For me, it is so hard to accept because I used to be very active. I started my working life as a meter reader and walked 5 to 8 miles a day for years with no problem and now 35 years later, I can barely walk a mile without mutiple breaks and increased next day pain.
    The acceptance part of not being strong and capable is so very hard and as my strength has slipped away over the years, it is a never ending grieving process. Everytime I realise what I can no longer do, I grieve. I guess that is a part of the human condition for us all as we age but for those with EDS it happens decades earlier. That sense of loss does make me angry and there is fear that I will continue to decline but I am going to fight and hope and pray that I can keep it together and keep things in perspective.
    So defeat is a bad word. Fight is a better word. I am not ready to give up yet and I accept I will have to fight and I can find peace with that.


    1. please don’t apologize at all… these are all words that I think we are working through and each and every one has a valid place in our spectrum of emotions … I am so glad that you have your wheel chair AND that is still sits in the garage, I think that I kind of feared that too, but we were saying at breakfast with our friend this morning that even if I only use it a handful of times a year, it will be worth it! I have special crutches as I can’t use normal ones, my wrists and hands can’t cope with normal ones, I think I need to do a post on crutches alone LOL … but they still take strain on my shoulders so part of the problem is that I can’t use them for long. I love your chair idea!! I think that I will do that too! I already take a small blanket with me everywhere I go as the cold (even a small bit) makes my aches even worse, so to have a throw rug on my lap makes a HUGE difference which is also just as important as being able to not use when it is warm … so to have a light stool is another good idea! Soon we will need the wheel chair to carry everything haha!!
      My problem is that I have injured my foot so badly that I can’t weight bear on it more than about 20%, and my other hip can’t take up the slack if I shift my weight onto that leg instead… So up until the end of last year I still looked “normal” and could walk quite far once I got going, but now that has all changed 😦 … my foot is the straw that broke the camels back I guess…
      I found myself nodding to everything in that comment and I totally relate and you put it beautifully, thank you!! 🙂


  3. Thank you so much for understanding. Your response brought tears to my eyes. I am so sorry that your foot is causing you to have to adjust how you cope day to day. Praying it will heal and stop causing you pain. Take care and thank you again. It truly is comforting to know that there is such a kind person that I was able to share with♡


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