What Autoimmune Disease Really Feels Like

As March is Autoimmune Disease Awareness Month, I wanted to share my own experience of living with an autoimmune condition. As autoimmune conditions – an immune response which causes the body to attack itself – are by their nature often invisible, they can lead to misunderstanding, misconception, and sometimes disbelief. Many sufferers are confronted with the notion that their health complaints are somehow invalid, or exist only within their imaginations. As someone who has suffered from this type of illness myself, I can promise you, nothing could be further from the truth.

My own experience began in August 2016, when I fell ill with bacterial pneumonia. For three weeks I felt so awful that I could barely move from the confines of my bed. After initially being misdiagnosed with a virus, I was eventually given antibiotics that targeted the offending bacteria. Within a couple of weeks I felt much better and returned with renewed vigour to my normal, busy life.

In early 2017, though, my situation worsened. Suddenly the underactive thyroid I had managed satisfactorily for many years went into chaos and I began to feel very, very ill. I was exhausted all the time, my bones and muscles ached, I developed eczema and suffered regular outbreaks of cystic acne.  I felt shivery and feverish, suffered with brain fog and was often troubled by ringing in my ears. I regularly took painkillers so I could get to sleep at night because my legs ached so much (a troubling symptom I can only describe as ‘leg headaches’). As the months wore on I developed a near-constant sore throat, pain under my shoulder blades and a sick feeling that always seemed to settle in my back.

For many months, I went back and forth to my doctor, who was sympathetic but puzzled by my array of symptoms. I was tested for all sorts of things including Coeliac Disease, Lyme Disease and Systemic Lupus, but none of the results really shed any light on what was going on. My thyroid results had certainly worsened though, and private testing confirmed that my underactive thyroid was caused by the autoimmune condition Hashimotos. At least I had found some sort of reason – although even I still found it hard to believe that my thyroid alone could be causing this much suffering and pain.

Mentally, months of trying to find out what was wrong were taking their toll on me. I was exhausted all the time and by 5pm daily would find myself tearful and struggling to get through the after-school routine. I would see others power-housing their way through life while I stumbled through mine, feeling utterly deflated. Knowing other people who were dealing with ‘real’, identifiable, and sometimes very serious conditions also added to my sense of guilt about how I was feeling. That sense of guilt and shame which often accompany autoimmune illness will be familiar to many others who suffer in this way.  I felt powerfully that my own issues were somehow embarrassing, that I was a let-down, that I should try to deny the way I was feeling. And yet, the way I was feeling just would not retreat from me – whatever I did, it seemed, the symptoms simply refused to go away.

Thankfully, there was some kind of light at the end of the tunnel – albeit a glimmer. Throughout 2017 I had visited various health and lifestyle practitioners who were able to steer me in the direction of some strategies to try. On the back of this I gave up gluten, dairy and introduced a lot more self-care into my lifestyle. It has taken a while, but when I look back on the way I was feeling this time last year I can see that small and steady improvements have been made.

I have come to accept that I will never really know what triggered the autoimmune element of my condition. Was it the pneumonia, 40-plus hormonal changes, or a genetic trigger? (in my family, autoimmune illness is fairly rife). Most likely, it was a combination of all three, and over time it’s something I have learned to adapt to. I’ve learned that stress, busyness, cold weather and a certain point in my monthly cycle conspire against me.  I’ve learned that yoga, meditation, baths and books are my dear and trusted friends. I’ve learned that being more mindful of the good days, the bad days, and the days where I am back in the trenches and fighting is nothing to be ashamed of.

And for today, at least, I’m looking up at the world and feeling good.

 

 

 

 

 

 

8 thoughts on “What Autoimmune Disease Really Feels Like

  1. susankmann says:

    You are an amazing woman. It is not hard living with a disease like that. I too have an autoimmune disease in the form of a kidney disease. It took a long time to diagnose after a long illness. I feel for you and think you are a true inspiration xx

    Liked by 1 person

  2. Suzanne W says:

    I tried to comment on this post earlier but it deleted by accident I think! I think you’re doing amazingly Gail, I had absolutely no idea that you were going through such health difficulties. You only ever elude to it and never moan. Thank you for giving us a little insight into your world. xx

    Liked by 1 person

  3. Jean Buckland says:

    As you know I also suffer with an autoimmune disorder.
    You have managed to explain beautifully just what we as sufferers go through.
    You are an inspiration to many so stop beating yourself up with guilt.
    Your boys are amazing which means that you have achieved one of the most important roles in life raising the future’s gentlemen xx

    Liked by 1 person

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