Do you wish that your family and friends knew more about your chronic illness and how it affects your life? I do!

The truth is, they see the results of chronic illness in my behaviour; through my interactions with them and the emotions that invariably come to the surface.

What they see though, doesn’t show the whole picture of what I’m feeling internally; what I try to hide from others; and the energy spent trying to “push through” and live as normal a life as possible.

5 things that I wish others took the time to understand:

1.  I CAN’T ALWAYS TELL YOU EXACTLY WHAT I’M FEELING / MY WORDS DON’T ALWAYS GIVE THE WHOLE PICTURE OF MY CHRONIC ILLNESS: This evening as I was sharing some of my day with my husband, he reflected back to me: “do you know that you’ve said at least six times how very tired you are?”  It wasn’t a criticism; he was just mirroring back to me what he was seeing and hearing.

When I stopped and thought about what I was trying to convey – it was true I was tired, but I was mostly overwhelmed because all afternoon I couldn’t get my head around what I was trying to do.  Each time I thought I had a handle on it, the thoughts would disappear, and I’d find it almost impossible to pick it up again.

It’s called brain fog and it is one of the most annoying and debilitating symptoms of my Fibromyalgia.  I found this article helpful to describe brain fog:  Brain Fog and Fibromyalgia

I find it one of the scariest.  My mother passed away two months ago.  The last eight years of her life were lived with dementia – a truly horrible illness.

When I’m in the midst of brain fog and I can’t hold my thoughts together, I often fear where I’m headed and whether dementia is a part of my future, too.

(This isn’t based on medical research or anything like it, but I’m sure if you’ve experienced brain fog, you’ve possibly wondered, like me, whether you’re losing a part of your mind.)

So, the start of each day isn’t very positive.  I just hope that my body will loosen up a little and start moving without me having to think through every movement.

5.  I DON’T WANT SYMPATHY: I try not to be rude to people who don’t know me, but I really hate sympathy.  It often comes in one or two forms.  “Oh, I’m so sorry.  How ever do you manage?”.  Or “Oh, I knew someone who had…such and such an illness.  They had no end of trouble, etc, etc, etc.”

It really doesn’t help to hear from someone else about others struggles with illness.  I don’t feel like they are present with me and want to hear about my life.  It feels like they just want to “dump” some useful information they know about someone else.

I truly value having others share their own stories with me, that’s not the problem.  In fact, that’s usually a joy and are special moments in time.

But when others are trying to match up symptoms with people, etc, it usually ends up being exhausting as you listen to stories of people you don’t know and who aren’t present.

I don’t mean to sound ungrateful. 

I know that often people share these things with the best of intentions – to try and connect, but unfortunately, sympathy doesn’t help.

Empathy is another thing all together.  Having others want to know what life is like and spend time to actively listen to my world, is very precious.

Sometimes, it’s just easier to stay quiet, to listen outwardly, but inwardly withdraw.  It takes energy to keep everything inside, when you long for others to understand.  It also takes a lot of energy to try and share your life with others.

Finally:

Over the years I’ve developed friendships where I can share what is going on for me and this is where I know it’s safe for me to tell them what my life is currently like with Fibromyalgia.  I also enjoy doing the same for them – giving them my space and time to share their world.

These five things that I wish others understood about my life has developed over a long period of time (I’ve had Fibromyalgia for over 20 years.).  You may find this blog helpful: Fibromyalgia – what you need to know! 

Complaining about my life gets me no-where, and that wasn’t my intention here.  I hope that by sharing these things others might be able to articulate what they need in their life to help them move forward.  If we can’t find the words to tell others, we can’t expect them to understand.

Sometimes, when you’re with someone close to you who wants to understand, just starting the conversation about what your world is like, means that together you can discover the words to describe it.  It’s a special gift to have friends who help you find clarity about your own life.  It also takes courage.

There’s a wonderful quote by Theodore Roosevelt that I love.

How does anyone respond to a diagnosis of Fibromyalgia? 

Let’s be honest, most of us probably haven’t heard much about it before we started to feel symptoms that fit the box of Fibromyalgia.

It can be a long journey to finally reach a diagnosis of Fibromyalgia.  The journey often consists of some of the following:

• developing a range of symptoms:
  • widespread as well as quite specific points of pain;
  • aching limbs;
  • brain fog (difficulty in thinking clearly);
  • struggling to do normal, everyday activities that you used to do all the time.
  • Interrupted sleep and waking up feeling unrefreshed.
• numerous visits to Doctors and Specialists – some who will seem sceptical of your symptoms.
• Struggling to describe to your family and friends so that they can understand what is going on within you.  The symptoms of Fibromyalgia aren’t visible to others.

This list is just the beginning – it certainly isn’t an exhaustive list. 

As you start to explore what this illness Fibromyalgia is all about, you’ll discover that over 5 million American’s are diagnosed with it.  In Australia 2-5% of the population has it.  You’re not alone, but you may often feel like you are.

Most articles that you will read on Fibromyalgia will state:

• That fibromyalgia is difficult to diagnosis;
• That the cause of Fibromyalgia isn’t known;
• There isn’t a known cure for Fibromyalgia.

As a result, finding information about this chronic illness and how to live with it, can take a while.  

I’ve discovered that the best places to learn more about Fibromyalgia are from those who live with it every day.   They are the ones who have faced the effects of it and learnt how to adjust their everyday life to manage it. 

Exercise is said to help sufferers of Fibromyalgia but, it can also cause further fatigue and pain.   Although, if we allow ourselves to live a sedentary life, we will end up having other conditions to have to worry about – obesity, diabetes, etc. 

I don’t state these things to frustrate anyone.  The truth is that the reality of living with Fibromyalgia is confusing and frustrating.  It’s a challenge to make sense out of the various symptoms of this chronic illness.  Then you need to work out how to live your life with them.  It’s a challenge. 

The reason I write about Fibromyalgia is because I’ve lived with it for 20+ years. 

To be totally honest, there are still some days where I don’t know what the best thing to do is.  I may feel tired, with aching limbs and not be able to think clearly through the brain fog.  Maybe I should push through this and ignore how I’m feeling? Or maybe I should slow down and give myself some time to rest and recharge. 

Obviously, we must look at the big picture.  If all we do is “pushing through” then we are setting ourselves up to fall and, most likely, end up in bed for a week or more. 

But if we’ve managed our days well and we’re not feeling too bad, maybe it’s okay to push through and do something that’s important to us. 

Just working through this kind of thing in your head is exhausting and frustrating!

It’s why we need to connect with others who are going through a similar situation.  We need to hear how others manage their life, so we can get some new ideas of how to move forward.  It’s refreshing to relate to others who understand what you’re going through. 

Remember that you’re not alone.  Many others are going through very similar situations as you are. 

If you don’t have Fibromyalgia, but know of others that do, then the best thing you can do is be a willing listener; to help when you can, but most of all be a friend.