Bravery: the quality or state of having or showing mental or moral strength to face danger, fear or difficulty. The quality or state of being brave
It is not uncommon for others to remark on my bravery in the face of FND. And in defiance of the many symptoms that accompany life with a neurological disorder.
Those closest to me throw words like brave, resilient and strong to describe me.
For me, however, it comes as a shock.
I look in the mirror and am unable to find bravery, or strength in the reflection staring back at me. A reflection whereby I am only able to recognise fear and anxiety etched beneath the surface of my face. I ask myself, can it be true? Could I be brave, despite not feeling it or failing to recognise it in my reflection?
Reminiscing on my last few blog posts and retrospecting on the difficulties I’ve faced has only made me question other people’s perception of my apparent bravery. During a flare, I feel anything but brave or strong. My sole purpose was to survive the day amidst the debilitating symptoms. Why is it that others see courage and strength within me, while I am unable to see it in myself?
"During a flare, I feel anything but brave or strong. Why is it that others see courage and strength within me, while I am unable to see it in myself?" Share on X
I came to realise that I have yet to recognise bravery within myself because I regularly feel an overriding sense of fear and anxiety. So intense that it seemingly obliterates the ability to identify with the concept of courage or resilience. Fear and anxiety, however, feel all too familiar, a supposedly permanent byproduct to life with a neurological disorder. Another symptom that we have to learn to grapple with alongside numerous others.
"Fear and anxiety, feel all too familiar, a supposedly permanent byproduct to life with illness. Another symptom that we have to learn to grapple with alongside numerous others." Share on X
I have had to become familiar with all kinds of fear and worries while living with a neurological disorder.
Fear and Anxieties That Accompany Chronic Illness
"I fear the disorder and its unpredictability, always on edge, waiting with bated breath for symptoms to present themselves again." Share on XOne such example is the fear of the disorder and the way it takes over my entire life. I fear the unpredictability of the symptoms; always on edge, waiting with bated breath for symptoms to present themselves again. There are days when I feel relatively well, days where my mobility is OK and getting around is somewhat easy. Other days, however, I am debilitated by pain and other symptoms associated with FND.
Hindered further by fear and anxieties; fear of the impermanence that illness has on every facet of my life. Fear of the permanence of the condition and the huge question mark it leaves in its wake. Fearsome and anxious thoughts wrangle for attention, shining a flashlight on everything that I cannot control.
"Fear and anxious thoughts fight for attention, shining a flashlight on everything I can't control." Share on XWhen symptoms do begin their torment of my body and life, so begins a fear of what it means. There is a worry whether these symptoms are the beginning of a severe flare. Or worse, the start of a deterioration in the disorder with which we live. We fear how long these symptoms will last and what our future will look like if they continue. There is fear over potential treatments that we may need as a result, which causes further anxieties such as possible side effects.
Photo by Katii Bishop from Pexels
All of these are fears of the unknown. The many question marks that exist when diagnosed with a chronic illness. And as these fears and anxieties intensify, so does the tight knot in my stomach, making me feel nauseous. These intense waves of fear and anxiety only cause further exacerbations with the ongoing symptoms. And as the symptoms intensify, so does the stress, creating a never-ending cycle, one which is difficult to break.
"There is a fear of the unknown when living with chronic illness." Share on XThe Lies They Tell
There are numerous scenarios where these anxieties can take hold, affecting my ability to function outside my limited comfort zone. Many situations that trigger fear and anxiety, symptoms holding me hostage as worries over becoming severely unwell, or suffering a fall become prominent in my mind. Even in places which are deeply familiar, where the layouts of shops or certain facilities are ingrained in my memory also becoming fearful due to the unknown of what is going to happen, catastrophising to the worse case scenarios. Going to new and unfamiliar places, however, can invoke even worse anxiety due to all of the unknowns, and not knowing what to do or the best place to go if the worst happens. As a result, we tend to confine ourselves inside of our comfort zones, limiting ourselves and markedly shrinking our world.
The fears and anxieties tell us that we are not strong enough and that we are unable to cope with whatever our illness throws at us. Our minds lead us to believe that these fears and anxieties are more significant than they are.
"Our fears lie to us, making us believe that we are not strong or brave in the face of illness." Share on XHowever, they lie.
Our minds make us think that we are to blame for our illness, to make us feel shame towards ourselves for being weak. I can understand now that this is wrong; illness is something that happens to us, not because of something we’ve done or an inherent character flaw.
"Illness is something that happens to us, not because of an inherent character flaw." Share on XAnxiety as a Familiar Companion
Fear and anxiety have both been a long companion of mine, has become much a symptom of Functional Neurological Disorder (FND) as pain or trembling in the legs. They feel familiar and have needed help to try and overcome its effect on my life, especially the impact they have on my experience with a chronic illness. Many courses, such as one in Acceptance and Commitment Therapy (ACT) have taught me to change how I react to fear and anxiety. Lessons on how to explore these deep-seated fears and what I can learn from them.
"Fear and anxiety I have become much a symptom of illness, as much as pain or dizziness." Share on XIt is essential to acknowledge the fear and anxiety and to become intimate with them. By doing so, I can now recognise the physical manifestation, the thoughts that accompany them and finally how I respond. Through mindfulness, I have been able to learn so much about my fears and anxieties, and more importantly the knowledge that I do not have to relinquish all control over to them. It reminded me of a famous quote by Mark Twain; “Courage is resistance to fear, mastery of fear, not absence of fear.”
We are all prone to fear and anxiety in our lives, but what make us brave is feeling those feelings and moving forward regardless. Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us.
"Being brave is recognising fear and anxiety and ignoring them and choosing hope; sticking two fingers up to anxiety and doing that which frightens us." Share on XThis week, my Mum and I headed to London to visit the Harry Potter Studio Tour. As a big fan of both the books and subsequent films, it has been somewhere I have wanted to visit for some time. However, recently, a lot of my symptoms have worsened, experiencing what has been a severe flare. And as the trip came closer, anxious thoughts began racing through my mind. My mind began to deceive me into believing that I was not strong enough to be able to cope with the impending trip. My mind led me to think that my symptoms and illness is stronger than me. It even tried to convince me; it would be better if I would cancel the trip and not go.
"My mind often leads to believe that my symptoms and illness are stronger than me." Share on X
However, I refused to give in and yield to the demands of either the symptoms I live with or the ensuing anxiety, figuratively sticking two fingers at the intrusive thoughts entering my conscious thoughts. I went regardless and yes, at times during the tour, it proved difficult because of pain, trembling and vertigo. But I did it and enjoyed myself regardless. There have been many instances where I have not been able to go to certain places or do something due to the severity of the symptoms. Have I ever given up? No, I may not go on that day but I dust myself off from the disappointment and my recriminations, and I try again tomorrow (or when the symptoms are less severe).
So perhaps, I am braver than I believe myself to be and validation to myself that I am stronger than my illness.
"We are braver than we lead ourselves to be and are stronger than our conditions." Share on X
14 Comments
It’s like you read my mind. Every time a system flares up I start to feel anxious because I fear what’s coming.
hugs!!! tweeted one of your quotes (love that option) and followed you on twitter too. stay strong and thanks for the great quotes. Joy at http://www.thejoyousliving.com
Thank you so much for reading and taking the time to comment. Followed you too on Twitter! Looking forward to getting to know you and your blog more. Hugs Rhiann xx
Such an amazing post, so powerful. X
Thank you so much!! Hope you have a lovely weekend xxx
Wonderful post! Really helped me! Thanks for sharing !
Thank you so so much!!
Hope you have a lovely day! xx
Great post Rhiann! Anxiety is such a rubbish addition to the whole chronic illness gig, but your post is so helpful in identifying why you feel the way you do, which is sometimes half the battle.
I’m glad you went to the Harry Potter Studio tour and you enjoyed yourself. Loved the pictures. Did you get a butter beer and if so, are they any good?
xx
Thank you so much Kate! Yes, anxiety can be such a pain, and I admit that I don’t always cope with it well and prone to avoiding places where symptoms are likely to be worse (such as high ceilings for me) but yes, knowing why it happens and various triggers can be a real help in preparation and getting our coping strategies in place.
The Harry Potter Studio Tour was absolutely amazing and although difficult at times I am so glad I went. No, unfortunately, I didn’t get a chance to get a butter beer – the queue was so long and as cream is in the drink I was worried that it could set off my IBS, but did hear from others that it was delicious!
Rhiann x
I’m close to tears. First time I’ve come across this site. I don’t know how to blog or tweet but hope I find you again on FB. You nailed it.
I’ve had polio, my fair share of broken bones and illnesses. I’ve had end stage ovarian cancer twice.
NOTHING has brought me to my knees like fibromyalgia. It’s the only thing that makes me cry. Been ten years now and I’ve been working on the steps I’m reading about in your blog.
I’m 73 and my biggest loss is not being able to pick up my grandchildren, play with my grandchildren. And have my childrens’ trust restored that their children are safe with me.
Sorry I’ve gone on so long. Thank you. Judy
Hello Judy, thank you so much for reading and sharing your story with me. I am touched that my writing has resonated with you so much. I am so sorry that your illness has caused you to lose so much< I really hope that you can work through the steps and can use them to improve situations in your life. Take care Judy xx
Fantastic and very powerful post ❤️ So much of what you’ve said totally resonates with me ❤️
Thank you so much Rosie!! ?
I don’t know where to start with this. You’ve made a lot of spot on points and there’s so much I can relate to and totally agree with. “Why is it that others see courage and strength within me, while I am unable to see it in myself?” < This, I’m seeing a lot in the chronic illness community. And you saying that our minds make us think we’re to blame for our illness and situation and feel shame for being week, that’s hard to deal with.
I’ve had anxiety since it was first diagnosed around 19 (oddly enough when I was trying and failing to take my driving test!) On and off medication, and should really get back on it properly but with other painkillers I'm more hesitant. Sadly, while during stays in hospital I’ve felt like I’m going to make things different, it always snaps back to the same old thing when I’m home; a bundle of stress and anxiety through the roof, where illness has just perpetuated it. I think some extra stress has sparked it with trying to work from home and not make enough to cover groceries, then worries about upcoming surgery, fear over the unknown, over the health of others.. I actually didn’t realise how big a thing fear was in my life until more recently. I think it’s what’s kept me so ridiculously stuck this past year.
I’m so glad, and I bet you are too, that you shouted louder than your illness and the anxiety and went on the HP tour trip. I think there’s a difference between giving in, which we can do for hours, or days or even weeks, and giving up, which is far more long term. As you say, the key is to keep trying. Keep holding onto hope for brighter days and knowing that we can shout more loudly than our symptoms and scream more loudly than our anxiety.
I'm so glad I spotted you sharing this on the FB boards. Excellent post, Rhiann!
Caz xx