I missed you, where did you go ?

By Orkney Fibromyalgia Sufferer

There are days I look in the mirror at my grey, pasty, drawn-in face and say to myself “I miss you where did you go?”

image of a young woman taking a selfie, it has been muted to pale greys

Having a chronic illness turns your whole world upside down. It affects every part of your life. Not just physically but mentally too.

It’s like being burgled. Robbed of your most prized possessions. Your mind, body and soul, friends, careers and family in some cases, are all taken away. You will find that even the people closest to you won’t understand. You will also find the people you thought were your closest friends weren’t at all. They never were. You were unaware. Now they’ve revealed their true selves. It hurts.

“You will be surrounded by many so-called well-wishers during your good times, but there will be only a few ones around you in your bad times.” – ANURAG PRAKASH RAY

Sometimes I think it’s the the hardest part of becoming chronically ill. You feel abandoned and very much alone. Those people who you always used to turn to in a crisis are gone. Their backs firmly turned. Your devastating news forgotten, no longer cared about.

You are at your lowest ebb. You know that there’s no quick fix. No magic cure. This is for life. On top of this unrelenting time of symptoms, side effects you have to watch the people you thought cared slowly slip away from you.

When you don’t get better after a few weeks you will discover people’s compassion diminishes rather quickly.

Now the years have passed. I have processed the hurt. I decided to use it as a lesson. It made me stronger. I never used to suffer fools. I suffer even less now.

If anything it’s made me more compassionate than before. Being an empath, I didn’t think that was possible.

Despite it all. I haven’t allowed it to harden my heart. If anything when I look back all I feel is pitty for them. They are all still in the same place. I moved on, my ill health forced me to, but in some ways I am thankful that chronic illness shined a light over what needed to be changed in my life.

On one hand, chronic illness has taken so much away from me but on the other, it’s given me as much.

What did chronic illness take from me?

  • My health
  • My 16 year career
  • Most of my friends
  • My freedom
  • The ability to be the mother I always planned to be
  • Time oh so much time
  • My hopes and dreams
  • My lust for life
  • My social life
  • The option of having another child
  • The respect people had for me
  • The respect I had for them

What did chronic illness give me instead?

  • A new career
  • New friends (most of them online friendships but that’s perfectly ok)
  • A different kind of emotional freedom. More than I ever had before
  • New hopes and dreams
  • A renewed lust for life (this took years, I still lose my Jois de Vivre at times, don’t we all though?)
  • A newfound respect for others and their struggles
  • An online chronic illness community
  • Orkney Fibromyalgia Sufferer’s social media platform
  • A voice which I demand to be heard
  • A desire to always help anyone in need (I had this before only now it’s magnified 10 fold)

Sure I lost myself along the way. The important thing is that I found myself. Albeit a new, slightly improved version. Mentally not physically.

It took sheer grit and determination. I still have dark days. The difference is that I know the light days will come. It might take days, hours or months at times. But that’s ok.

Had I not been the strong, determined, adaptable person I am. I don’t think that I would have been able to crawl my way out of the black hole.

From experience, I know that when you are in the depths of chronic illness the last thing you want to hear is that it will pass or better days are coming. I found in the midst of what feels like no control over anything, you do in fact have control of one very important thing. Your ability to be happy. It’s easier said than done I know. If you put the work into what makes you truly happy, concentrate on that it can spark a chain reaction. Of course, it doesn’t magically take your pain and symptoms away. If you can learn to control how you respond to a situation it will give you an unbelievable feeling of empowerment.

“Control what you can control. Learn to let go of what you can’t. Do that and you will reach an unbelievable level of freedom” – ORKNEY FIBROMYALGIA SUFFERER

Now when I look in the mirror with a knowing smile I say. “I missed you, where did you go? I know where you went, I am glad you are back”

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7 replies »

      • As far as I can tell – and I think that it’s recognized as being so – the symptoms of Long Covid and other conditions which include fatigue can be very similar.

        I posted these comments as part of an effort to get folk to realise what life can be like for people with these conditions, and how much that affects society in general.

      • What do you mean by its? Do you mean that chronic fatigue is recognized as being long covid? Surely it’s the other way around?

        From what I have have learned some of those with long covid suffer chronic fatigue. Again like many chronic illnesses the symptoms are complex and intertwined.

  1. “As far as I can tell – and I think that it’s recognized as being so –“

    I don’t see how else to phrase this….. a different example of using that form of words…

    “As far as I can tell – and I think that it’s recognized as being so – many animals are frightened by fireworks.”

    I’m obviously not saying that Long Covid is Fatigue Syndrome – or vice-versa – I repeat….

    “I posted these comments as part of an effort to get folk to realise what life can be like for people with these conditions, and how much that affects society in general.”

    I am now stepping way from this exchange, as it has become confused.

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