Just when you think you’ve started to work out how to live with this massive curve ball in your life called Fibromyalgia, something else comes along that you have to deal with.   Its name is grief and it will more than likely have a broad affect across your life.

I share this, not to discourage you, but to help you be prepared and not so knocked around by its effects.  I speak as someone who has lived with grief for periods in my life.

“Why grief?” you may ask.  Well, in all honesty and bluntness, why not!  Think about everything that has changed in your life due to the onset of Fibromyalgia.  Every one of us has different symptoms and varying ways to respond to them.  But what all Fibromyalgia sufferers have in common is that everyone has had to change living their lives the way they used to due to the pain and/or fatigue that they now experience. For some, the loss is enormous.  The pain and/or fatigue cripples you and means that you have to let go of many of the things that were routine in your life before.  Going out after work with friends; playing sport; partying; working fulltime; doing fun, exhausting things with your kids; the list of things we can no longer manage is long. Is it any wonder that grief also enters your life?  There has been a lot to let go of, to change, and to embrace since your diagnosis of Fibromyalgia. Everyone will find differences in the way the grief emerges.  Below is a list of possible times when grief can hit:

• When you are diagnosed:  It’s normal to have a sense of relief when you have a name to what has been going on in your body.  But at the same time, you are told that you will live with this condition for the rest of your life.

• When you have to say “no” to doing things:  It’s often painful and difficult to have to stop doing so many of the things that have made up your life.  As you realize that you can no longer do these things, it’s natural to have grief rise within you.  There is an enormous sense of loss for the life that used to be yours.

• Living a “reduced” life:  It often takes time to discover and adjust to a lifestyle that your body can manage.  This time often causes frustration and grief as you recognise this isn’t how you expected to live life.

• Realizing you are powerless to change things: One of the hardest things to realize is that you can’t change the diagnosis of Fibromyalgia.  You can’t change the symptoms that you experience every day.  You have to accept them and the limitations that come with them.

All of the above times in a Fibromyalgia person’s life are significant and often painful.   Some people find that grief can follow quickly.  For others it’s a slower process. Whenever it comes, it’s important to do the following 4 things:

1. Acknowledge the loss that you’ve experienced.

It is so important to acknowledge what you have been through and how it has left you feeling.

2. Put into words what is happening for you.  Being able to “name” and express the different things that happen in your life is helpful for several reasons:  Firstly,  to be able to find the words – a name for what is changing in your life.  Secondly, having the words is helpful as you try and explain to those close to you what you are  feeling, etc. It will help you and them, if you can clearly describe what’s happening for you  physically & emotionally.  It may take awhile for you to find the words to do this.  Journaling each day, even just a little, can help you in this process.  

3. Find someone to talk to and share your feelings with.

This can be someone you’re close to and if you have a partner, you will want to keep them in touch with what’s happening for you.  But often, it’s good to have someone that’s a little distant to you, to be able to “offload” to.  A counsellor, or mentor would be ideal.  

4. Finally, remember that even with all of the change and limitations, you are still YOU AND YOU HAVE SOMETHING IMPORTANT TO CONTRIBUTE TO THIS LIFE.

I know that this can feel impossible.  You feel as if you have lost so much due to your illness, but the truth is that you still have so much to do, to be and to offer to others in this life.    Your feelings may tell you otherwise, but remember, sometimes your feelings don’t tell you the whole picture.  It’s been over 20 years since I was diagnosed with Fibromyalgia.  I have found grief to come and go throughout this time.  When it hits, speaking with a counsellor has been very helpful and I’ve been surprized how quickly I can move through it. I didn’t always seek this help out quickly in the early years and I regret that, because as a result, it took me longer to work through the feelings and find a balance in my life. The important thing for me, and I believe it’s true for others, is to not let the grief settle and become a part of your day to day life.  Seek, and ask for help.  There isn’t any sense of failure in doing this.  It’s the best thing you can possibly do.  The changes that have come into your life are unsettling and you will sometimes need some “outside” help to know how to adjust to your new life. You do have a new life.  It may look very different to what you knew before and even what you hoped it to be.  But it is your life and you will learn how to live it.  Be patient with yourself.  You need to give yourself some time and find the help you need to live it effectively. You may be surprized by some of the new, creative things that become a part of your new life.

One of the first things you think about when you’ve been diagnosed with fibromyalgia, or any chronic illness, is how is this going to affect your life? Initially, it can feel like you have no choices at all.  The pain and/or fatigue overtakes your life and you can’t do anything that you used to do.

Changes need to be made in your life to manage the various symptoms that can be overwhelming at times.  It’s a time of adjusting as you work out what you need to let go of, and what you need to do to help you have some quality of life.  Each person needs to allow themselves the time to go through this process.

As well as this, you need to choose who you want to be as a person.

Here are five ways you can choose to live your life:

1. As a Grouch. Now let me be honest, we all have days when all we want is to tell somebody how we are feeling.  This isn’t what the Grouch is. The Grouch wants to tell people over and over and over again how lousy they feel.  They don’t want to be left alone.   (That means they would have to listen to themselves whinge!).  They want to keep on saying how unfair life is; how much pain they have; and how weak they feel.  They don’t want to let go of these feelings.  In a strange way there is something normal about the place they are in.  At least they know what they feel, and they have a need to keep on telling others about it.

Another way you can choose to live your life is:

2. In Denial – Let me tell you right up front, this one has a very short life-span. It’s just not possible to ignore all of the symptoms and go on living life to the fullest.  Unless you’re Superwoman or Iron Man – you will “crash” sometime.

The following quote from the Mayo Clinic Staff describes when being in denial is okay: “Denial is a coping mechanism that gives you time to adjust to distressing situations — but staying in denial can interfere with treatment or your ability to tackle challenges.” Denial has to only have a short life span, otherwise it has negative consequences and stops you from moving forward. Here are 3 different levels of being in denial:

• Total denial – where you don’t acknowledge anything about what is happening for you physically, emotionally and spiritually. This is a dangerous and unhealthy place to stay.  At some point you need to accept your current situation, so you can move on and live your life.
• Partial denial – where you own that you have limitations, but don’t like to let them dictate what your life looks like. This sounds okay, doesn’t it?  Isn’t it better to try and keep on living life the way you used to do? Only if you want to “crash and burn” somewhere down the track.

There are often times when we all live in partial denial, especially when we don’t want to have to face something about ourselves.  Again, it can be seen as a time of adjustment, but we need to move forward with our lives, we need to accept our lives without filters.

• Partial acceptance – this is starting to look a little healthier than the other two. At least with partial acceptance, we are naming and owning that part of our life has changed.  We may accept that we have a chronic illness; or that we have to “slow down” a little, etc.

But we still don’t own that our lives have changed, and life may never look the same as it was before.

All of these ways of living in denial may occur for a short time when you first receive your diagnosis. That’s normal.  But it’s not normal to stay in any of these phases.  You need to look beyond and move forward.

3.  As a Manipulator – is another way to choose how you live your life with chronic illness. (It sounds almost evil doesn’t it?)  In this stage you acknowledge some or all of your illness and use it to help you get out of things that you don’t like to do!  Or maybe, get things that you want.  You don’t have any intention of working out how to best live your life and work around your limitations.  You just use your illness when it suits you.

Not a particularly healthy way to live your life.  It also won’t help you to keep your friends.  They will see through you and disappear quickly.

4. Seeking Sympathy – this one could come under the Manipulator, but I think it deserves a category of its own.

I’m sure we’ve all comes across somebody who lives with a “woe is me” attitude and just wants to have everybody’s sympathy.  “Poor me.  Look at what I have to live with.  Aren’t I amazing the way I live with chronic illness?”  I’m sure you get the gist of it.

To be totally honest with you, I don’t understand why anyone would ever want to live their life seeking sympathy.  But people do.  They want to have that experience of being the centre of attention with people acknowledging how hard life must be, etc.  For me, I would find this draining.  I don’t like people mothering me – and this is what seeking sympathy can partly be about.  “You poor thing, etc”

But there are plenty of people around who live in this state of seeking sympathy.  It isn’t healthy at all and I encourage you to think if there is any part of your life where you do seek sympathy and how you can change your behaviour to something healthier and life giving.

5. You can also choose to accept your life and move forward.

It is very normal to have moments where you live some of the above-mentioned ways – especially when you first receive your diagnosis of your chronic illness and are trying to work out how to live with it.  But it isn’t healthy to stay stuck in any of them.

For many, the journey to receiving a diagnosis has been a long and tedious one.  You’ve often felt misunderstood; judged; seen as having symptoms “all in the head”; alone; scared, to name a few…

When you finally have a name for what you live with, it can come as a shock.

You’ve been pushing so hard just to find answers to what’s wrong with you, you almost don’t believe it when you do have a diagnosis. 

This can be quite a confusing time.  To start with there can be more questions than answers:

• • • What does having this illness mean?
    • How am I supposed to live with this?
    • Is there any help I can get?
    • Who can tell me what this condition actually is and does to me?
    • What is normal for me now? 

It’s very normal to have lots of questions.

Your challenge will be to have enough patience with yourself and others as you try and seek answers.  You may not even know yet what the questions are that you need to ask!

That’s okay.  It’s quite normal to have lots of questions at this time.  We need to give ourselves time to work out what our next steps are.

When I was told that I have Fibromyalgia, the pain specialist told me two things.  Firstly, that it wouldn’t kill me and secondly, that there’s no cure for it and I’ll have it for the rest of my life.

That’s quite a curve ball that I and many, many others have received, when diagnosed with a chronic illness.   It’s no wonder that it upends our life for a period of time.

But one of the most important things that I have learnt is that I can still choose how I will live my life.

Of course, I have limitations due to my illness, but there are still many ways that I can choose how I live my life at this time.

Victor Frankl states: “When we are no longer able to change a situation, we are challenged to change ourselves.”

This is the challenge we hit with a diagnosis, isn’t it?  We can’t change that we have Fibromyalgia (or your conditions name), but we can still choose how to live our life and who we want to become.

When we accept this, we can move on into the life that still awaits us.  Yes, it will look different to what was expected it to be before our illness.

But it is still life – your life and it’s yours to grab hold of and shape in your own unique way. 

I’ve mentioned before in my blog about my brother-in-law who passed away a few years ago from Motor Neurons Disease.  (If you don’t know what this illness is click here for more info https://m.mndaust.asn.au/Get-informed/What-is-MND )

Even when he couldn’t walk anymore; couldn’t speak; had limited movement; couldn’t do anything that he used to love to do, was literally wasting away – he could smile. Whenever someone walked into the room, he smiled, and the room would light up.  (It wasn’t an artificial smile – it was genuine and everyone on the receiving end of that smile felt the warm glow from it.)

My brother in law could have just as easily greeted each person with a frown, ignored them or shown no warmth at all – and who would have blamed him!  But he chose to give all those who entered his life at this time a smile.  I’m not sure I’ve ever received such a precious gift.

He has certainly challenged me to work at how I live my life.

How will you choose to live your life?

One of the minefields you need to navigate when you are diagnosed with Fibromyalgia, or any chronic illness – is who needs to know?  Who do I need to tell that I have Fibromyalgia? 

It may seem like a very minor thing to some of you as you read this but working out who you tell that you have been diagnosed with a chronic illness, isn’t always simple. Sure, there are the obvious people that need to know:

1. Your family – those that live with you day by day need to know about your diagnosis. They will already know that things aren’t right because of the symptoms you display daily, which caused you to seek a diagnosis in the first place.

But just as it may have been a relief for you to know you don’t have an illness that will kill you, so it will be for them as well.

2. Your closest friends – like your family, are probably already aware that something is not right. They too, will be relieved to know that it isn’t terminal and will want to know how to care for you.

But after these people, there are things that you need to consider before telling others about your condition. Some people are very quick to put you “into a box” titled chronic illness or Fibromyalgia; or whatever the name of your condition.  This is understandable to a point, because they are reflecting on their experience of people with chronic illness, but the trouble is, you don’t know what they mean when they say, “chronic illness”.  They may have had experience with others who have had chronic illness which wasn’t very positive!  When they think of these people, they think of how others have lived it out, for example, they may think they’re:

• Chronic whingers;
• Always back out of things at the last minute;
• Always focussed of themselves;
• Doesn’t make time to spend with friends, etc.;
• Talks about themselves all the time;

I’m sure you can add some more to the list.  We’ve all experienced people like this (they don’t even need to have a chronic illness!!) The truth is the above list does describe some people who are chronically ill.  But it doesn’t describe everyone, and it doesn’t have to describe you!

I would encourage anyone who has recently been diagnosed with Fibromyalgia or any chronic illness, to take your time and think about who you want to take the journey with, as you manoeuvre your way through working out what your life will look like now.

The next group of people you need to consider telling is your employer.  Only you can really know the answer to this.  Some jobs rely on us being 100% fit and healthy (eg pilots; those in the army/navy, etc;), in which case we really don’t have much of a choice.

I had been living with Fibromyalgia for 10+ years when I was reminded that it’s not always helpful when everyone knows about our condition. I started a new job, which was part-time and suited me quite well.  The person I answered to knew that I had Fibromyalgia.  (I hadn’t told her, but she knew through somebody else.)  That was okay and didn’t bother me until a bit further down the track, when she was making decisions about whether I could take on a role with more responsibility than I’d currently had.  It would mean more hours, but still not a full-time load. 

I had thought it through and wanted to apply for the position. (I spent considerable time working it through; speaking to my husband about it – it certainly wasn’t a rushed decision.)  So, I did apply and without taking time to consider anything, I was told no, it would be too much for me to manage with Fibromyalgia.

Up until this point I had proven very reliable; had worked harder than lots of others in the office; and had not let my Fibromyalgia stop me from being at work; relating well to others and completing my tasks above standard. So, why wouldn’t they even consider me for the job?  Because I had Fibromyalgia. I honestly believe, if my boss hadn’t known about my illness, she wouldn’t have acted in the way she did. (Instead, I changed jobs; worked longer hours; took on more responsibility and managed it well.)

I tell that story for two reasons.  Firstly, because I know there are others who have experienced the same thing and it has left them feeling confused and bruised.  Like me, move on and learn from the experience!  Secondly, I share it because I hope that those who are newly diagnosed will take time to consider whether they need to tell their employers, etc about their condition. It’s not that you’re wanting to be deceitful.  If you know that your condition will affect your work, then you need to have a discussion with your supervisor. 

As I said above, some jobs are reliant on a fully fit and able person taking on the daily tasks.  It may bring harm to others if you continue as you are. But if you don’t know and haven’t worked out what you can manage on a day to day basis, then maybe it is good to take a little time and work out how you want to manage this.  Or, others will manage it for you!

We all have different symptoms that we need to learn how to manage.  For me, I experience some pain with a greater degree of fatigue.  I have had to take some days off my work because of my fatigue, but no more than anyone else in the office has taken off with colds/flu, etc. The reason I encourage you to work out who you want to know about your Fibromyalgia is because you will need to live with their responses to your illness.  That may seem insignificant to some, but for others, always being asked or told:

• “how are you today?”;
• “you poor thing, I don’t know how you manage it”;
• “do you need to rest?”.

…isn’t very helpful.

When people ask me “how are you?”, I have an internal process that goes like this:

• What do I want to say to this person?
• How will they react?
• Do I feel up to living with their response/reaction?
• How am I feeling today?

What a difficult question to answer!! Often, when people ask me how I am, I say “I’m okay”.  It depends on who they are and how close they are to me, but I then may go on and say what I’m feeling internally and physically.

I’m not brushing anyone off by saying “I’m okay” – often I am saying it because I need to hear it.  I am okay.  I may be struggling with pain, fatigue and brain fog, but, I, Bron, am okay in myself.

When I hear myself say to others that “I’m feeling awful”; “I’m really flat today”; or “I’m not great” it’s too easy for me to accept that I’m talking about me as a whole person.  This is where depression can take over so quickly, for me. I’ve had to learn to stop and remind myself that I am okay.  I am doing the best I know how to live with this condition that has been plaguing me for 20+ years and I need to manage the pain and fatigue, but when I can see myself as body, soul & spirit and can affirm to myself that in lots of ways (in my soul & spirit) I am doing okay, I don’t get so overwhelmed.

I want to tell you a little of my journey of living with Fibromyalgia.

It’s been helpful for me when I hear others’ journeys and how they’ve managed in the process.

My hope is that telling my story might help others when they find themselves diagnosed with this chronic illness and are trying to make sense of their life.

Not long after I had my second child, I began feeling exhausted all the time.  It’s an understatement to say that I was overwhelmed with the weakness I felt all the time in my arms and legs especially.

My neck and shoulders felt like they “locked up” – they were tense every day. 

(I often said at this time, that it felt like I was living with the flu, concentrated in my neck and shoulders.) I began to understand what the expression “brain fog” meant, as I found it almost impossible to think clearly.

Up until this time I had led a very active life.  I loved my work and tended to immerse myself in it.  I loved my little family and enjoyed our time together.  I also had a great group of friends – most of whom were Mums too.

The only way I know how to describe the change in me was it was like I’d hit a brick wall and my body said “enough”.  

I couldn’t do much at all – which isn’t easy when you have two little kids to care for.

It took around two years of medical appointments to fina It took around two years of medical appointments to finally be diagnosed with Fibromyalgia.  I underwent numerous tests and saw a variety of specialists, all of whom responded differently to my symptoms.

It was a helpful illustration for me, as I would often find the fatigue more debilitating than the pain in the early years.  My muscles ached all the time, but I found I could still do things in my daily routine.  Whereas the fatigue was so overwhelming that some days I found it difficult to do anything at all.

All of the above happened 20 years ago.   I’ve lived with the symptoms of Fibromyalgia every day since then.

Instead of telling the whole story of my life (and putting you to sleep in the process) here are the key things that I’ve learned through living my life with this chronic illness:

1. Living with an illness like this is incredibly hard work. Just trying to work out each day what you think you can manage to do, can be exhausting.  You need to learn to be gentle on yourself.

2. It’s good to have some structured and unstructured days in your week.  Sometimes it is harder to work out what you think you can do, than it is to just get up and go to work or take the kids to an appointment – or whatever, where there’s a deadline.  It’s great though to have days where you can just do whatever you have to do in your own time.

3. I’ve learnt over time to make space in my life for the things that are important to me and my family – even it means I’m going to have a few “down” days as a result. I know for me, that it’s the “second day after” I do something that the fatigue and aching get worse.  I need to plan for this in what I do.

4. On the days I work (3 days a week); I don’t do anything on those evenings. Most nights I’m in bed by 7.30pm.  I don’t sleep then, but I relax and allow my body to unwind.
5. Learning what is important and what isn’t is a journey that takes time!  Here are a few that I’ve learned…

• I don’t fuss about having a spotless house.  It’s tidy and mostly clean.
• Spending time with my husband, kids and broader family is important and worth making time for regardless of how I’m feeling.
• Taking my eyes off myself and focusing on others is very important for me. Otherwise I get totally self-absorbed and that’s not living to me.
• Listen to those you trust about what they see of your life. I know I can’t see myself clearly.  Often my husband will say something about how I’ve been, and I won’t have been aware of it.  eg. he sometimes tells me I’m sighing a lot – a sure sign that I’m frustrated.
• It’s important to have someone to talk to about how you’re travelling.  Sometimes it’s better to have someone that’s outside of your family.  A counsellor or trusted friend that you can share what life is really like for you and know that they will listen and help as appropriate.

• It’s difficult living with an illness that no one else can see. I’ve heard others say they’d find it easier if they had a broken leg or something tangible that others can see.  This is certainly an issue for everyone with Fibromyalgia.  We need to learn when to say what we’re feeling and when not to say anything.

More often or not I don’t tell people that I have Fibromyalgia unless I really need to.  I don’t like feeling that people have put me in a box constructed of what they know of Fibromyalgia.  It’s easy to spot those who I’m safe to talk to about it – they’re usually people who have similar conditions.

The list of things I’ve learnt over the past twenty years goes on and on.

There are still frustrating days when I just wish I could do more than I presently can. For example:

• Play tennis (my hands are too weak);
• go on long hikes;
• travel overseas and visit lots of different places;
• stay up late;
• not have to manage my time based on how I’m feeling.

But having said all that, I have a life I love and, as I face each day with a positive attitude, accepting my limitations, I find I enjoy learning new things about myself, others and this world around me.

One of the things that I am super passionate about is helping others who battle with Fibromyalgia and other debilitating chronic illnesses so they can live a life that they love.

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