CRPS My Journey: Chapter 27 - "Fear (like quicksand)...the longer you stand in it, the harder it is to move."

“Courage is resistance to fear, mastery of fear, not absence of fear.” – Mark Twain

Oxford Dictionary:

fear (noun): an unpleasant emotion caused by the threat of danger, pain, or harm.
fear (verb): be afraid of (someone or something) as likely to be dangerous, painful, or harmful.

At the start of a new year, sitting next to the beach with my family, I have had some time to contemplate on the term "fear", how it affects the human psyche, especially when dealing with Chronic pain and how it affects the outlook on our future. For many of us, fear has become an integral part of our being, whether we use it as a survival mechanism, a motivator, or whether we simply give into it due to an emotional inability or lack of strength to work past it and overcome it. I don't think there is one person in this world, that has not been confronted by fear at some point in their lives. The sad reality is that for many people, fear has become an all-consuming part of their lives.

I remember when I had my operation, that started all of this. My greatest fear at that time was to receive anesthesia, as I usually get sick afterwards. Never would I have thought that that fear will be replaced with greater fears that would set of a whole chain of fearful events. Whenever I felt that I have reached my limit, the next fear would rear its head, and another and another - each time worse than before (or so it felt). Some fears I could see/feel creeping up on me, while others just sprung on me like a wild cat. I soon had to realise that I cannot live my life by what my fear(s) "predicted" MIGHT possibly happen. In some instances my fears might have been justified, but in other instances it had no justification at all. It has become so easy to live like a tortoise, continuously retracting my head in my shell, living in fight or flight mode all the time.

Looking at the new year that lies ahead, I cannot but wonder to what extend we will allow fear to guide our thoughts, actions and abilities in the days to come. For some of us it may be the familiarity of living in fear that keeps us there - a false sense of "security" where you know that you need to escape that fear, but fear the unknown beyond that fear..

Frigophobia - a persistent, abnormal, and unwarranted fear of coldness, despite conscious understanding by the phobic individual and reassurance by others that there is no danger. It is also known as cryophobia, cheimaphobia or cheimatophobia.

For others it may be the fear of fear itself. Fearing the emotions that you experience when fear overcome you.

Phobophobia: is the fear of fear itself, but more specifically, of the internal sensations associated with that phobia and anxiety, which binds it closely to other anxiety disorders, especially with generalized anxiety disorders (free floating fears) and panic attacks.

Regardless of the reason why we entertain fear in our lives, we need to agree that fear, although a valid basic human emotion, can be a useful instinct...but can just as well be a disruption in our lives when not managed, thus allowing it to get out of control. Fear is programmed into the nervous system and works like an instinct to protect us. From infancy, our survival instinct is to respond in fear when we sense danger or feel unsafe, but it can also originate from imagined dangers. In such instances it can lead to distress, and when left untreated, it can become so extreme that it can lead to an actual threat.

This made me think of fear in my own life, especially living with CRPS (and the connection between fear and CRPS). A known fact is that fear can cause a variety of anxiety disorders. Anxiety on the other hand can manifest in a physical form through muscle spasms, muscle twitching, cramps, pulsing, throbbing, tremors, and involuntary muscle movements. These symptoms have a direct impact on CRPS and are also symptoms often associated with CRPS.

For many (most) of us living with CRPS, fear has become a part of our everyday lives. Fear for the unknown - fear for how our body will react on new challenges. Fear for the known, that the things that we are attached to will come to an end, but also fear for what we know will follow when we step out of our comfort zone, or do something that we know will end in flare-ups. Nobody that lives with chronic pain willingly want to ignite more pain. Many CRPS warriors report a fear of movement that can worsen symptoms and increase disability

Metathesiophobia, or the fear of change. We fear change, again because of the unknown element that change brings. What if my CRPS flares up? What if I cannot handle the pain? What if I cannot accomplish this thing because of my CRPS? What if...

Often when we live in this type of fear, it becomes easier to just avoid life in the hopes that we rather not aggravate our CRPS. It is exhausting enough to live with CRPS, that we often feel that we do not have the energy to hold onto life. Yet nothing worthwhile has ever been accomplished without putting yourself out there, jumping into the unknown (knowing what you know). So what if...my fears are unsubstantiated or irrational and I actually achieve what I thought would never again be possible? Isn't that in itself worth a try?

Pain can create a barrier in life...but it can also become a motivator if you allow it. Yes, it might not be easy, and I might not feel like it at times (or ever), but I owe it to myself to try. I may never be able to do some of the things that I used to - that is something that I have to deal with. I may never be able to live without pain again - that is something that I have to accept. But I will never know what I am able to accomplish, in spite of my pain, if I let fear dictate my life.

I still have a choice of being part of this life, or just accepting my fate and give up. And this is a conscious decision that I have to make every day. And this decision starts with my choice of what I am going to do with my fear. If I decide to allow my fear to consume me, I cannot expect to overcome any physical, mental or emotional challenges that pain my bring. However, if I decide to say no to my fear, to live every day, one moment, one breath at a time, to accept the bad with the good, and not live in the past, then I have the ability to create hope within myself to say yes to life...no matter how painful it may be.

One of the greatest feelings that I experienced when I was still hiking and kloofing was the sense of accomplishment afterwards. Knowing that the pain and exhaustion that I experienced during the hike was worth it. Looking out from the top of the mountain, enjoying that incredible view and that peace and tranquillity that nature brings, made all the pain and battles to get there seem like a distant memory, a necessary discomfort to achieve an amazing outcome. 

Conquering my fear does not mean that I deny my pain, or that I blind myself to my condition. It simply means that I refuse to become a slave to fear. Conquering fear comes in various forms. In practice it may mean that today it might be working with the band saw, despite fearing flare-ups or how my hand is going to react on the strain of holding the wood straight, overdoing it with fine motor skills or the possibility of injuring myself in the process. Tomorrow it may be the fear of just being able to get out of bed, being able to grip something in my hand without dropping it or experiencing more pain, after pushing my limits today. Fear comes in many forms. Fearing what the future holds, what my condition will be tomorrow, next week, next year or in ten years from now. Fearing that CRPS will spread to other areas of my body. Fearing what I may or may not be able to do as time goes by.

I have read the other day of a CRPS warrior that recently got the diagnosis that her CRPS spread to her internal organs. Others have lost limbs due top CRPS. While others gave up on life and tried suicide because they just could not live with this disease any more. Whatever our fears, we all have them. One thing however that I have thought about a lot while contemplating the definition of fear, is something that might sound like a cliché. It is something that Franklin D. Roosevelt said during his 1933 inaugural address: "There is nothing to Fear but Fear Itself".

Fear in itself can become greater than any external threat or possible flare-up or possible extreme outcome of CRPS, as fear can become our primary obstacle to progress and success. When you live in fear, you close yourself off from all and any possible blessings and positive influences in your life. If I continue to live in fear of what CRPS may or not do to me, of what I may or may not be able to do tomorrow or the day after, or whether it is spreading or not, I will continue to close myself off from living life to the fullest, as far as I possibly can. I will prevent myself from conquering things that may have become obstacles and challenges in my life due to CRPS. I will eventually stop living.

Fear cannot be my future. If I want to live a more fulfilling life, despite this disease, then I cannot live by fear. There is difference between living in fear, and living responsibly. Of course I need to be responsible in whatever I do. That is when I need to use my fear as a motivator to 1. prove my own fears wrong, and 2. to achieve progress and success. One day, one breath at a time. Today a win may be helping my kids to build something special for their mom, tomorrow my win may be to be able to get out of bed, open my hand and pick up my cup of coffee. A win may not always be wow and extraordinary when you have CRPS, but a win is a win and that is awesome in itself. You see how I can see the same scenario either as a fear or a win? It is all about perception.

Living in fear causes extra stress. As CRPS warriors often exhibit heightened levels of anxiety and depression, fear may directly and indirectly lead to flare-ups. In my own life I have experienced that the more I protect and hide my hand out of fear that people may bump into it or I my hit it, the tenser I get, and the easier that tension lead to flare-ups. And as Murphy’s Law would have it, I would often bump it, the more I am trying to avoid bumping it. As affirmed before, CRPS is not a mental illness, however fear and my physical and emotional response to that fear definitely have an effect on my condition, how it presents and how I respond to CRPS. If my fear consumes me, it will have a negative impact on my CRPS, but if I overcome that fear or channel that fear and use it as a motivator, I am more likely to achieve goals that I otherwise might not have been able to.

Unfortunately there is no quick fix or solution for dealing with fear, and for people that have struggled with fear their whole life due to their circumstances or the type of personality that they have, it may never be easy to let go of their fears. NOT easy....BUT not impossible.

There is a saying that goes: "You become what you feed your mind". If I tell myself often enough and long enough that I cannot accomplish something because I have CRPS...I will eventually believe it and I won't even try. BUT...if I tell myself every day that I am going to attempt something and that I will take the smallest achievement as a win on which I can build my confidence, strength and abilities, before long, I will have achieved much more than I initially set out to achieve. Never sell yourself short because of fear. I would not have been where I am today, if I had given in to my fears after being diagnosed. Yes, I still have my bad flare-up days, I still cannot do a lot of stuff that I used to - either at all or in the way I used to - I still get anxious when I challenge myself or do something which I know will increase my pain for the next day or two or three. However...I deal with that when I have to. For today, if I am able to achieve something that I were not able to do yesterday, then that is a major win. If I need to rest tomorrow, then so be it. It does not mean that I am lazy, simply that I am rewarding my body by looking after it and listening to it, for the win that I had the day before. It is all about perspective.

Michael J Fox put is so well when he spoke about his struggle with Parkinson’s: "You deal with the condition, and you deal with people's perception of the condition. It was easy for me to tune in to the way other people were looking into my eyes and seeing their own fear reflected back. I'd assure them that 'I'm doing great' — because I was. After a while, the disconnect between the way I felt and the dread people were projecting just seemed, you know, funny."

When fear propels into anxiety...

There will be times when fear becomes unavoidable and ultimately ends in anxiety attacks. You will remember that earlier in my blog I spoke about getting anxiety attacks when I entered a certain store, and how I had to learn to deal with this when it happened. Anxiety attacks are horrible, especially when this was never a problem before. So how can I approach this and get my control back, before it leads to more harmful situations? By grounding myself. There are different techniques that one can practice, but it basically come down to this...breaking the fear cycle, by calming oneself and regaining control of you actions and emotions and surroundings. To deal with this, I practice mindfulness, which I spoke about in Chapter 19. Another way of dealing with this is by following these tips:

1. Take a few seconds to look around you
2. Find 5 things that you can see
3. Find 4 things that you can touch
4. Find 3 things that you can hear
5. Find 2 things that you can smell
6. Find 1 thing that you can taste

By doing this you are starting to ground yourself, when you feel that you have lost all control of your surroundings. You are brining yourself back to a safe and calm space where you can regain control of your emotions.

Medical gaslighting

A term that was unknown to me until recently when some CRPS warriors shared their experiences on this. I have known about this practice, but I never knew that there was a formal term for this called Medical gaslighting. But what is it?

Medical gaslighting is term used to describe doctors or medical practitioners who wrongly deny a patient's illness entirely, for example wrongly telling patients that they are not really sick, or blame a patient's physical illness or symptoms on psychological factors. These healthcare providers will often refuse to order labs or imaging, even if your symptoms warrant a closer look. This often leads to a misdiagnosis which in turn lead to delayed or wrong treatment. Another form of medical gaslighting is rude or condescending behaviour on the part of the healthcare provider.

In the technological and advanced age that we are living in, it is hard to believe that these type of healthcare providers still exist. Martin Luther King Jnr said, "Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity". Knowing that something like CRPS has been diagnosed a hundred years ago, or even not knowing and refusing to seek assistance from other colleagues in your profession, while still refusing to see and acknowledge the symptoms and the disease itself, is to live in total ignorance and conscientious stupidity.

Knowledge does not start when I open my mouth, nor does it start when I read or study a book. True knowledge is gained when I start to truly listen, without preconceived ideas, in order to gain a greater understanding.

Since my diagnosis I have been blessed to have had healthcare providers that knows about CRPS. In certain cases, they are well educated in CRPS, in other instances they have limited knowledge but are willing to learn. And in cases where I had healthcare providers that have not heard of the disease before, they were honest about it, and willing to learn and listen to gain some understanding. That is saying a lot in a country where very little is known or heard of the disease. Which makes it even worse when you hear of Medical Gaslighting in 1st world countries where you find Clinics and institutes that specializes in treating this disease. How can it be that despite growth in the medical field, you still find healthcare providers that refuse to listen to understand and just blatantly deny that which they do not understand and do not know. Perhaps it is a matter of "ignorance is bliss", perhaps it is stubbornness or perhaps it is a matter of having seen too many patients that tried to mislead the medical profession by claiming to be ill when they were not. Whatever the reason(s) are, one cannot refuse to see the truth, simply because of one or two patients that may have played the system. You cannot leave those who truly suffer and need help out in the cold, because of what you have experienced or what you do not understand.

The specialist that initially diagnosed me (I have shared this before) told me once that I am in a better position to explain CRPS and what it feels like and how it affects me, than he will ever be. This does not make me a specialist in the field, however it does make me an expert in my own body and someone worth listening to. And yes, expert does not mean All-knowing or having the right to be condescending. It does mean that I have personal knowledge and experience that are valuable for those in the medical field to search for answers, treatments and a possible cure.

Holly Teichholtz, head of communications at the Fox Foundation said the following of Michael J Fox: "His message is so simple, it gets forgotten: The people living with the disease are the experts,".

Neither the healthcare provider, nor myself, have the luxury of being condescending towards one another. Treating other humans with decency and respect is a basic human value - regardless of whether I am a doctor that has studied for many years or a patient that have to live in this living hell each and every moment of every day. The only way to look for a solution is to do it in partnership with each other. As much as the healthcare provider need us to trust them, we also need them to trust us.

Follow-up on Counsel of Medical Schemes outcome

According to them they have investigated my case, and although they "understand" my case and my plea, and although they have "empathy" for me and other CRPS warriors, they denied my request as the medical aid is adhering to the "minimum" prescribed benefit...which in layman’s terms mean that they do not have to do more than that or even have to commit to reviewing it. It is things like this that create the image that CRPS is not chronic enough for medical aids to acknowledge it as being the chronic disease that it is. I have 30 days to appeal this, which I will be doing. I have contacted the legal counsel of Rare Diseases SA for advise on this matter and will report back on the outcome.

May 2024 be a blessed and fairly pain free year for all.