Grieving what used to be
There are 7 stages of grief; Shock, Denial, Anger , Bargaining , Depression, Acceptance, “Testing” For someone suffering from fibromyalgia or other debilitating illnesses, at some point we ‘re passing through some, most, or all of these stages. Unfortunately many are going to go through these more than once and others are never going to pass through the earlier stages. And there are those who can more than once go through any of these levels.
There is no perfect path to get through these stages and many will fail to get through them with “how.” I definitely don’t have the right answers and if you just want to learn the truth, I’m not sure I went through any of the stages successfully. So how does a person navigate through those stages, how do we know if we got through them?
For me, this is going to be a very sensitive post, I’ll share some very intimate stuff with you and as a friend of mine has just said, “I share with honesty. Cover the rough stuff so many times ». And maybe that’ll be a way for me to step past any of the mourning steps.
So how does a person move through the stages of grief?
As people experience sadness, or the stages of it, you might notice, as I do, that you may only walk through each stage, have some similar emotions for each stage that others encounter. But what does it mean to actually get through every stage?
Acceptance is the last stage of grief, but it may be a part of every stage, or the completion of every stage. And if you can get to each stage ‘s acceptance part, then maybe you are “going through” it successfully. Perhaps this is the end of your mourning, you ‘re moving on and your life is moving forward and you’re learning to live what your “new” life is going to be.
Yet the mourning cycle can never stop for many of us. It could be like a song on continuous repeat, we tiptoe through each point, experience each phase ‘s feeling and move on to the next step, but without any real resolution. Or, you ‘re moving ahead and then coming back to an earlier point, or beginning once again at stage one. There’s no deadline, or predetermined period of time you ‘re going to spend ascending this ladder or shifting from left to right like reading a book, hitting a new point, or no timetable to step forward, however you look at those levels.
As I said earlier, I don’t have the right answers, and I’m going to be the first to tell you, I’ve struggled, and I’m struggling now, through this labyrinth of grief for who I once was, what my life used to be, and what I “left behind,” as well as feeling and trying to understand the things that I think my family is feeling or experiencing now because they’re also going through some form of grief.
Let’s start at the first stage and work our way through them. I’m not saying that you’re going to get through all these stages successfully, but I’m trying to share my path through any of them because I’ve experienced them and as you’ll also see, I may not have “gotten through” every stage successfully, I just “experienced” every stage.
So, first stage; SHOCK!! Ok, I guess I can confidently assume that this is one level of mourning that has not really surprised any of us. In fact, many, if not many of us, knew when we would finally learn this diagnosis from our doctors / specialists the day we received, “The Diagnosis.” This period is actually an easy period of grieving to go through because all of us would move right past it. We ‘re no strangers to what news we ‘re going to hear.
But we will struggle with the diagnosis because there are limited treatment options for those who have this condition. I know this news didn’t surprise me at all, but, like all of you, we believed or realized what was going on, we just couldn’t find a doctor who took our questions seriously enough to examine it. To those of us who deal with Fibro or chronic pain, you’ve had considerable luck with the current medications, effective medication and control of the symptoms.
And, either you skip to Step 2, or this is a fast process and you get on with your life and recovery, you don’t have to endure the remainder of the stages of grief. We will both be able to do so in a ideal universe, but this is not a perfect world as we all know. So we are now trying to move on to Stage Two.
And the second stage is, denial. Now that’s a stage that we’ve all been through but may or may not struggle with. Along with “shock” stage one, disbelief is also a very normal emotion. And if we know profoundly what was going on, we are trying to ignore what was going on and we hope that there is a more “rational” reason. This is probably because there’s a stigma associated with fibromyalgia as we all know it.
It is maybe a “catch all” diagnosis issued by physicians who are unable to work out any other reasons. Or what all of us have said, it’s all in your head, maybe, if you wanted to do some exercise and lose weight, you ‘d feel better. And maybe some of us go through the denial stage fairly easily and find that we knew what was going to happen, and well, it’s a foregone conclusion of what we’re dealing with and we’ve moved on to this stage’s “acceptance,” because we knew that diagnosis was coming, why deny what we knew. No surprise, no doubt, but maybe we have the overriding feeling of ultimacy!
Finally, we’ve got someone who asks us what we think. Whether it’s been weeks, months, even years, someone actually got “HEARD” what we mean. The feeling of finality, of someone finally hearing what we’re saying is happening, and acknowledging what we’re feeling, is a feeling of satisfaction. This is however a sort of subjective stage of grief.
Most are likely to miss the period of denial, since it is an unwanted step. It was a diagnosis that has long been in the making. Why would we deny a diagnosis we knew we were having, we knew our lives were being destroyed? Ok, maybe the doubt lies in the sense that we continue to ignore that our body has turned on us in this way , no matter what we thought was happening. We want to deny the life we once lived and enjoyed, won’t be the same anymore? We want to deny that this beast has entered our lives and caused our life trajectory to change paths, to change our path from what we “thought” would be to the path that lies ahead of us. Denial of life to which we are now faced.
Stage 3 is madness. This is a stage which I know well as most of us are sure to do. This is a period that I have a very tough time “Giving.” For most, if not all of us, this is a very difficult step of the healing cycle. Anger is a very real part of the grief process, if anyone who has Fibro knows it. We ‘re angry about what’s become of our lives because of our condition.
We ‘re upset that there are few choices for those who have not been able to receive any sort of relief from any care plan. For a period of time, we have been trying “this” through the process, if that doesn’t work, try “this,” etc. We are angry that there is no working out the limited treatments out there.
Anger takes hold of us, why did this happen to us, why do we have to live life in pain, why is it that pain dictates everything we do in life? The “why” is the most difficult to answer, particularly when your life is about family. You need to be with them, you want to love spending time enjoying stuff with them so why do you have to live like this now and pick between your family or succumb to your body and miss out on too many plans.
Whether you’re actually going to function, you ‘re mad you’ve had to cope with the stress and exhaustion and having to manage yourself psychologically and perform a decent job, so you can’t appreciate the career as you’re dealing with agony, emotionally and literally, every day. So, you push yourself, you push yourself to the limit. You get so angry that nothing like you planned is your life.
Because of this disorder, there are so many things that lead you to be upset, it’s too hard to remember them all, because we all get mad over different things. I’ll be the first to say that I’ll probably never really get through this point. There’ll be something about that condition ALWAYS that will make me angry. And, if it means I’m never completely moving through all the stages of mourning, then I’m able to embrace it because I can’t relinquish my rage for this entity that has taken who I am and how I live my existence. I ‘m mad I had to live the way I’m doing.
The next stage is negotiation. This is not a level of mourning which I feel is completely important to a case of chronic pain. If negotiating means a lot of “what ifs” then in my mind there is no resolution to this. There is no known source of fibromyalgia or debilitating pain and people will waste hours saying, “if I did something, I would not be here,” or “if I hadn’t done something, I would not be hurting.”
But it’s like any other chronic illness or disease for me personally, no one could predict with any certainty that we’d end up with this, it just happened. As I always say, it’s what it is, at least on my less horrible days, and even if it won’t disappear, I’m going to have to take it everyday and cope with stuff when they come along.
Step five is depression. This is also a level that I don’t think I’ll ever stop, as all of us can testify. There are medications that will assist relieve signs of depression, but there’s no miracle drug that can wipe away all those emotions. Depression is a very complex thing, I’m not going to get through all the depression ‘s psychological complexities because there are multiple triggers and symptoms and it’s a sign of so many factors as well.
But for those suffering from debilitating pain or fibromyalgia, depression may not only be a symptom but also a consequence because we find it impossible to look at how our lives have changed and may improve due to discomfort, exhaustion and other symptoms that impede our enjoyment of living. We are deprimed by what we have lost or are going to lose.
We find that we are sad because we have to skip the family dinner, family holiday, night out with friends or just something as easy as going to a movie for the “hundredth” time. Nothing will override the emotions that we encounter, as we have to miss life once again. We ‘re going to shed countless tears as our family drives off to have fun without us while we’re stuck being unable to get out of bed, or off the couch. Depression ranges from moderate to extreme.
Some will try treatment to help get this out, some will rely on medications. Do what works for you, but don’t be afraid or ashamed to seek assistance to treat this. I have completed some counselling and I intend to control my depression with drugs. Some days are for sure better than most, and again I’ll freely confess I’m still dealing with that.
I fail on the days when my pain is strong, or when my tiredness is constant. In that day, I struggle to find happiness. I struggle to find the silver lining. I fail to smile and I fail to hide my frustration and suffering. Usually, my family is fantastic at picking up on those days I just don’t want to “play” that day, or those days I can’t. I can plaster on the smile on other days, and say, “I ‘m fine.”
My best advice is, don’t ever do that. Don’t put the false face on and plod through the day pretending to be good. It’s cool to give in to how you feel, how the body responds. Letting yourself lie in bed, tuning the world out, is cool. But it’s also very important not to let your life become like that. Caring for yourself is about taking care of your mental health.
So, will anyone ever get past the depression stage suffering from a chronic condition? I’ll confess, if depression doesn’t affect a aspect of your current life, I ‘d be very shocked. But if it gets too serious please get help!
Step six is “learning.” So that is a period that is not usually correlated with periods of depression and this is a step I’m not sure I’m going to have anything to address. The only way I would continue to relate that directly will be to “teste” myself and my boundaries. To fibro sufferers that is certainly not rare.
There are going to be TODAY things that need to be done. The laundry is not going to fold itself, the house is not going to clean itself, the dishes are not going to do themselves and so on … Nothing about our lives can be put on hold for ever. But in order to learn our limits we must test ourselves. Learn how far we can push ourselves to minimize the next day’s pain that we’ll experience.
Check ourselves when we need to ask for assistance, sit and relax when we need to, and mostly know what we need to do to take care of ourselves. Simple to say, always difficult to listen! I confess, I’m not calling for help as much as I could. I may do things that I used to do slower, but I still do them without asking for help, as perhaps asking for help is admitting that I can not do it myself. That is certainly something that I think we can all relate to in this journey at some point.
There’s acceptance, lastly. It is another step I will definitely never be in a position to complete. I was taught about a philosophy called progressive tolerance while I was in counseling. The best way to describe this idea is, you know what the life is going to be, and you need to find a way to embrace it and live it.
Probably this is not the best way to explain this concept now, but it rolls into the final stage of grief, acceptance. I’m pretty sure there’s never going to be a moment in my life when I can recognize completely that this is what my life is like today. I practice it every day, I do what I can, I pause when I have to, even though sadly, when I need help, I can ask for assistance.
But such actions do not mean I have agreed in any way that this is what my life is now. Yeah, I “know” that’s my life now and I’m trying to do it the best I can each day. But I’m not sure I’m ever going to be able to accept that, accept my limits, admit that my life is all about suffering, admit that I’m not who I was just a few years ago.
I can say with absolute certainty, I can’t accept that my life will be like this condition. I’m going to try my best not to let that define me and I understand acceptance doesn’t mean it’s going to make it go away. I assume that the lack of recognition is the core of it all. I know without a shadow of doubt that this will never be healed, no matter what sorts of therapy I seek, I’m not going to get help, I’m not going to recover.
But if I do not accept this condition, does it leave the hope open that I may be able to find a better way of living, a way of alleviating my suffering? I don’t know, in no way am I an expert. Should I go on investigating the treatments? Will I start seeking improvement in lifestyle as I have already? Of course, nobody wishes to believe that this is the life they will always have but to some degree, maybe I have acknowledged it because I know it won’t improve. I do think I’ll continue to suffer until a miraculous cure is found.
So maybe I got through this stage, and didn’t realize it. But, to be completely transparent again, I don’t want to accept that and I will always hate what it has made my life. Yet I am not going to stop. I’m not going to stop trying every day to find a sliver of happiness, remember what I’m lucky to have, love my family and the gifts I’ve got. I’m not going to stop trying to “start anew” with lifestyle decisions, doing whatever I can to try to lead as healthy a life as I can.
So, I’m not sure if anyone can get past grieving who they were once, grieving what their life used to be, grieving about what they miss out on. I realize I can’t overcome my sadness about what my life is like. But perhaps we don’t have to, as long as it doesn’t overtake who we are and keep us from living the best we can.