Nobody

Nobody Understands My Fibromyalgia, CFS/ME Part 1

In Blog by Alyssa Reid0 Comments

Every person on this planet is unique unto themselves. However, it is certainly not a rarity to feel like ‘nobody understands my fibromyalgia, CFS/ME’ or indeed any invisible illness.

Every body is very unique - including yours.

Every body is very unique – including yours.invisible illness.

I think it is really important to understand that basically nobody is ever going to ‘understand’ you. Ever. Have knowledge of, yes.  But actually understanding you is never going to happen.

The sooner we realise this, the less upsetting and frustrating things will be – otherwise we continue to hit our heads against the wall!  (And get stressed out, meaning that you will be in more pain due to muscle tension from stress!).

I know first hand that going through doctors, spouses/partners, employers, work colleagues and friends saying, ‘Get a grip and just get on with it’ not to mention the infamous, ‘It’s all in your head’ scenario. And it is a lonely road to travel.

We KNOW Something Isn’t Right…

…but all the tests come back negative…

If you get that feeling that something isn’t quite right, most of the time it isn’t.

We get bounced from pillar to post in regards to tests, changing doctors and going to consultants.  On average it can take up to 5 (yes FIVE!) years before getting a diagnosis for fibromyalgia and/or CFS/ME. The medications that we pray are going to work rarely do. And it feels like you are up against the world in a fight!

I also know what it is like to be told, ‘there is nothing left that we are able to do for you’, and the feeling of defeat.

In my voluntary work that I have done for fibromyalgia charities, as well as volunteering for FibroMapp App and our 9,000+ people on our Facebook page, I see how angry, frustrated, depressed, bitter and lonely people are feeling. Nobody gets it.  In fact, most of us struggle to ‘get it’ ourselves.

A Case in Point…

A couple of weeks ago, when my flare up was starting (which means asking my husband for more help, inevitably), hubby brought the clean laundry into the bedroom and was putting away his clothes – that needed ironing.  He then proceeded to tell me, ‘They don’t need ironing, you really don’t need to do it’.

My hero. Kermit The Frog. Yaaaaay!

So, great!  Yay!  (At this juncture I would like to point out that my husband created the award winning FibroMapp App, designed specifically for people with Fibromyalgia, CFS/ME…So, basically, I would say that he has a very, very good understanding of FM/CFS/ME on top of his personal experience (aka, me!)).

I also want to mention that, yes, I do blog about the FibroMapp a lot – and for very good reason!  It’s helping thousands of people gain more control over their illness, gain better treatment, diagnosis of other conditions and more investigations (instead of the ‘It’s just your fibro’ situation so many of us find ourselves in with our medical professionals. So, yep, I am shouting about this app from the rooftops!  Having an app like this is our ally – and even for some people, their saviour in finding out different diagnoses and treatments for life threatening illness that were originally passed off as ‘just your fibro’,)).

So…back to my story…

A few days later (still in a flare up – and have been for over a month now, sigh…), he brought up the clean laundry…and proceeded to lay it out in the area we use for what needs ironing (the banister).

no iron

The no iron legislation

So of course, I asked about the ‘no ironing legislation’ that was recently passed.

His response was, ‘That was when you were in pain’.

Erm..hello?  I am always in pain.  I just don’t mention it 24/7 (!!!!).

In other words, if my hubby struggles to ‘get it’…and he is so loving, kind, compassionate, supportive – and fairly knowledgeable about my condition…what does that say about other people who have no comprehension of the wily, weird and wacky ways of our conditions?

Getting the Support We Need

Getting the support we need.

Getting the support we need.

This is why support groups are so important – whether they are virtual or ones you attend physically.  Ultimately, we may not ‘understand’ what others are going through, but WE GET IT in regards to the ups and downs, the difficulties and victories.

I think it is also good to have a place that is ‘your own’ in regards to getting support, advice and well, love.  In fact, I think it’s imperative! Not to mention a place to vent and a place to ask questions that may be personal.

Invisible Illness Sucks…

…and conditions like fibromyalgia, chronic fatigue syndrome (CFS/ME) that vary daily in regards to our experiences makes it even harder for others to ‘get it’.

When asking a few of my fibromite and CFS friends what they would like me to write about, my friend Steph suggested, ‘the question from your friends when they see you using a wheelchair (on bad days) and they comment something like “you were running yesterday.”

Personally, I think this is a great question. One that I don’t have an answer for, tbh.  (However, I would love to read comments in regards to what you find works.)  For me, I made the decision long ago that I had nothing to prove to anybody.  I am who I am.  My illness is not me. I am not my illness.

Love is the Part of the Answer

We need to learn to love ourselves first.

So perhaps my answer for this question is ultimately, to love ourselves.  I have found, as have many friends of mine, that when we start loving ourselves, we stop putting up with other people who are negative, dramatic, energy sucking people.   And these people start disappearing in our lives, only to be replaced with people who are positive and loving.

Whatever!

I have found the ‘Whatever’ philosophy a good one.  Just to let things go by me, not give into the negative energy and get sucked in. Just, well, whatever!

So maybe the answer is simply to make a decision to love ourselves and stop trying to have to prove ourselves and our illnesses to others.

Obviously, what friends and family don’t see is that the fact that you probably were running yesterday means you are in a lot of pain today (and possibly a few more days as well…or even go into a flare up…).

The bottom line is, you shouldn’t have to ‘fight’ to be taken seriously and believe you have anything to prove with family, friends or work colleagues.

True Colours

True colours shine through!

True colours shine through!

Ultimately, when we fall ill or we are in a time of need, for whatever the reason, the people in our lives tend to show their true colours.

I can suggest you to print off literature, buy books, bringing your spouse/partner to your doctor’s so that they can hopefully ‘clue in’.

Unfortunately, at the end of the day if someone is being unsupportive, lacking compassion and care, no matter what you do or say, you can’t change people.  All you can do is change how you deal with and approach things.

I have found that in the past 8 years since my diagnosis, people do lose ‘friends’ and family at times.  But the bottom line is, if these people aren’t there for you during the time that support, care, help and compassion is needed, then they really aren’t the people you want in  your life to begin with!

 Desperate To Be Taken Seriously and Believed

It’s all in your head.

For so many of us, we have been through the mill in regards to getting a diagnosis for fibromyalgia and/or CFS/ME.  On average it takes 5 years (!) for a diagnosis and by that time, many of us have heard the ‘it’s all in your head’ far too many times to count.

At the end of the day, some people
end up leaving our lives because they are only interested in the ‘fun you’ vs the ‘ill you’.

The people in your life may very well change based on your illness…but the question is, if that’s how they are treating you (and ultimately disrespecting you and your health), why would you want to be around them to begin with?!

A few days ago, after I started writing this article, the Telegraph newspaper published, ‘It’s time for doctors to apologise to their ME patients’.  Hurray!  A small victory! But it is going to be a slow and upward climb to get everyone on our ‘side’.

You Don’t Look Sick

But you don’t look sick!

That’s because many of us are really awesome actors!!! We don’t want to complain (and many of us have learned that complaining is detrimental to our relationships with friends and family).  I think that this picture says it best.

What ‘norms’ tend to not get is the fact that we actually don’t WANT to be this way!  The knock-on effect of our illness not only affects us directly, but also our financial situation in many cases, our social life, sex life, diet, relationships and more.

It is easy to fall into feeling like a hypochondriac (or actually become one). We have put our brains on ‘high alert’ status!  And as we are generally very sensitive to what is occurring with our bodies, not to mention the endless amount of pharma meds, doctor’s appointments, therapy (physio, CBT, counselling etc.,).

It is very easy to become CONSUMED by our illness – and it can become our lives in a very negative way. When it never seems to end and every day can be a new day in regards to aches, pains, other symptoms…it can feel overwhelming for you – let alone others around you (particularly those you knew pre-condition.)

This also means that some of us end up in an ongoing dialogue of, ‘woe is me’.  For the record, nobody (including

Do you give an organ recital when someone asks how you are?

Do you give an organ recital when someone asks how you are?

yourself) wants to hear this on a constant basis.

Do you want to listen to someone else constantly give what my aunt calls an ‘organ recital’?  When I start going down this path, when my pain levels are soaring, I stop and start counting all the blessings in my life.

Admittedly, sadly, every day there tends to be someone who comes across my path with the ‘My life is over’ scenario.  And guess what?  It will be if that’s what you truly believe!

The fact that we have food, a safe roof over our heads, friends, family and so much more than millions of people in this world.

(In fact, I am typing this thinking, ‘I feel so blessed tblessedo have the internet and a laptop, and a clean bed, with a cutie pie cat at my feet, husband working away in the next room, near me if I need any assistance’…and I could go on!).

Perhaps We Believe in the Need…

I think that many of us fall into the belief that we NEED to tell people what you are feeling like and going through – so that they can understand you better.  See above – nobody is ever going to understand you to begin with.  And they won’t want to be around someone who has become entrenched in their illness and their only topic of discussion is about how their life sucks!

I think that there are two reasons we do this:

  • In the hopes that people will believe you, because you feel they think you are making this all up (Yep.  That’s right. We really want to kiss our lives of freedom, independence, financial stability, physical and mental capabilities goodbye.  NOT.) And because of this;
  • That you need to PROVE you’re unwell to others (particularly if you have had to go onto benefits, are making an insurance claim etc – knowing that in many cases we are in the fight for our care and quality of life depending on proving yourself.)

What Can Help…

A couple of years ago a blog showed up on Facebook about a husband (Mike Holien) who’s wife was diagnosed with fibromyalgia.  At first he was very dismissive until the penny dropped.  His life and that of his young family (4 kids!) had changed based on his wife’s inability to continue the way she was.

Mike has written an awesome book, from ‘the other side’ called Loving Those With Fibro. As soon as I read the blog I knew that I HAD to be in touch with this man.

I was touched by the kindness, compassion, ideas in regards to having a relationship and fun, but also getting it in regards to doing things that may be too painful – or has repercussions or flare ups due to overdoing things – not to mention having to cancel activities.

I had the honour of helping Mike by proofreading his book prior to publishing it.  I think that it provides an excellent insight into what our partners/spouses go through…and I fully believe if you are actually able to get your partner/spouse to read this book, that it can start to make a difference in your life – and give hope to you and your relationships. Here is Mike’s Facebook Page for Loving Those with Fibro.

Perhaps It’s ‘Sandwich Protocol’ Time

If it was me, I would be writing a wee note to the people in my life who are struggling with my illness and ask them to please read the book (that you handily provided for them!).  I always use the ‘sandwich protocol’ when writing anything…which is…positive stuff (I love you, please know how much I appreciate xyz…then the stuff that needs some turning around and ask for their help (in a loving and positive manner) and close with…more positive stuff.  (Writing a letter that is full of blame and demands is not going to help your case!).

Ask them to read a book, an article you have found or a link to a website or video that explains things easily – whatever you feel you need to do.

Request that if they care about you, then to please take just a few minutes – at the very least – to show them.  (Let’s face it – if they can’t afford you this much time, energy and effort to at least have a brief read of something in order to help them get a better appreciation of stuff…well, erm…that kinda says it all…!).

Surrounding ourselves with positive people – family, friends, medical professionals – makes all the difference in the world. And the first step starts with you!

I surround myself with positive, caring people.

Thank you for taking the time to read this. Stay tuned for Part 2!

If it has helped you – or may help others – please share! Comments always welcome, too!  Wishing you all a pain-free day!

Alyssa x

Written by our volunteer bloggist, Alyssa Reid.  Fellow spoonie and fibromite with many years experience in researching and providing voluntary support for people with fibromyalgia and CFS/ME.

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If you are interested in taking more control in self-managing your health and wellbeing, our FibroMapp App is a double award winning app (Healthline Best Fibromyalgia App 2014/15) and is helping thousands of patients gain more understanding and control.  By personalising the app to suit you, you can track everything from pain to sleep, medications (with alarms), journal, quick flare up button and more. All of which your data (private) is collated and dowfibromapp_pain_website_flatnloaded into easy to read printable reports.

Both healthcare professionals and patients alike are finding these reports highly beneficial.  These reports are also being used as backup data for insurance and legal issues as well as benefits/welfare.

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Bodymap Apps, creator of FibroMapp App, is a not for profit social enterprise specialising in eHealth. Alyssa Reid volunteers for Bodymap Apps and FibroMapp as a fibromyalgia, CFS/ME and invisible illness warrior. Her mission is to help empower others in gaining more control of their health and well being.

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