The journey thus far: #Invisble #Illness Part One… in the beginning there was no label, #Invisble #Illness Part Two… The illness defined and medical stigma born and #Invisble #illness Part Three… the thing that hides itself #invisibleillness
As an introvert I have spent a lot of time over the years thinking about chronic pain and about the process I got through. Interpreting it and myself. The experience of pain and the experience of living with pain. People, doctors and life itself all have an impact on how I coped with fibromyalgia and chronic migraines. However I also am a very internal person. A very internal thinker. Very much thinking about how I react to external influences, why, how I cope, what factors affect my coping and just working through it all. For an example to my introverted nature when I was having problems coping when I was younger with my yet to be diagnosed pain and was depressed for certain… I had this book about curing depressed naturally. And there was one chapter on cognitive therapy. All about negative thought patterns and habitual thoughts. Writing down the habitual thoughts you had and replacing them with more realistic ones and so forth. This seemed… reasonable. So I read it, did it and treated my own depressed… from a book… all introverted style, It was extremely effective for me. I think on someone with my INTP personality type cognitive therapy just makes sense. Even one chapter in a book. Such an introverted thing to do though. Then years later I wrote an article about it because worked for me. (Chronic pain and cognitive therapy: taking care of your emotional health) And I thought someone would read that and go that makes sense and go pick up a book or find a therapist that does it. It amuses me that that book cured my depression and helped me change how I thought about my illness and pain… helped me then develop we ways to cope. I should really have wrote the author about how awesome that one chapter was. I had a 100% success rate with that book and a 0% success rate with that doctor who said I was ‘chronically depressed’ and put me on Paxil.
Yes, loads of introverted power.
I know that people repetitively ask the same questions of me ‘how do you manage all the pain’ or some variation or come up with similar suggestions I have tried… but I understand it is difficult to comprehend an invisible disability, coping with chronic pain, understanding someones pain. And suggestions usually come from a good place. Or because people don’t know what to say, but feel they should say something. None of this bothers me and respond to each like I have never heard it before and honestly. There are those that do not come from that good place but see you as a problem to be fixed… and why don’t you try this, and why isn’t your lifestyle or diet perfect and why are you not doing enough to cure yourself and why are you not getting Better so you can make my life easier. And that is more difficult to deal with. I can try calm, rational knowledge but I find it often doesn’t work. Stigma is something we all encounter at one time or another in different sectors of society and it is far less about us and far more about these ideas about what it is to be ill, what they believe should be done about it and this idea as someone who is ill you are somehow to blame for your plight but also responsible for getting ‘better’. Certainly educating people on all the things we actually do in order to ‘function’ and all the things we have tried and are doing to potentially help with our illness can help enlighten people to the complexities of the situation… but we are not problems to be solved or fixed or gotten rid of.
However in all my time have a chronic illness I think myself in relation to my illness as much as I think about others in relation to my illness. I must know how I comprehend my illness and pain, which changes over time before I can understand my relation to others and my illness, which also changes over time. Stigma that I accepted as acceptable when I was younger I do not find so acceptable now. But I am more open and honest with people who have questions about how I cope or my illness… because I feel less inclined to hide it, since I no longer feel shackled by that stigma that influenced me when I was younger.
I started this blog to replace my journal and to vent and reach out to other that comprehended my experiences. It was cathartic and I needed that. I have always used writing as an outlet, either fiction, blogging or non-fiction. It morphed over time and it is more informative and less venting. I branched out into other social media with my Facebook Page which I love… a great way to express myself and share information. But writing about my experiencing with my illnesses has always helped me understand how I relate to it. What I think about it. And I write a lot about it.
I write just straight up informative articles. But sometimes I blog or write essays or reflection essays just on the experience itself. Because when I struggle to cope or even when I am coping well I just always think about the Experience. This Being in Pain. The Lived Experience. The chronic ill experience. And how this experience of living this life affects how I perceive the world, reality and time. And how it changes how how interact with the world. How it has changed fundamentally who I am… and not in a bad way necessarily.
What do I mean by that?
Well there are the Symptoms of course. Symptoms impact my reality and how I interact with reality and how people even perceive me. There is the pain of course. Pain impacts my ability to function, concentrate, my memory and my perception of the passage of time. There are the persistent migraine auras… which I blog about a lot. They have an impact that should not be minimized on my ability to perceive reality but at the same time I am fascinated at their ability to distort that reality and how that is not in the least an experience I can share but I try to explain it. There are the cognitive impairments of both fibromyalgia and chronic migraines that affect memory, concentration, written and verbal communication and all sorts of weird and bizarre things that are sometimes difficult to work around. All these things impact how I literally see and interact with the world… sometimes inhibit how I interact with the world, certainly distort my reality in various ways. How can that not have a profound impact on how I perceive reality? Every perception is affected, every sense distorted and memory unpredictable. And over time changes how I am perceived. I am ‘absent-minded’, I am ‘clumsy’, I am ‘forgetful’… labels I wear so long I feel they are a intrinsic part of me even though they are symptoms.
There are the coping strategies. I am fascinated by how we automatically adapt to chronic illness and chronic pain on a basic level. Based on our personality and just based on the fact we must on some level function in reality. The first is changes to personality… and on some level this can be positive and on some level it can be negative. It is the automatic response to a constant stressor of a chronic illness based on our personality… as in based on our automatic habitual coping strategies we generally use and developed at an early age. The most fundamental one I think of is being introverted and this idea that when I am stressed… I retreat. I need to be away from external stimulus to feel better. But this can lead to ‘the Hermit Zone’ which it has quite frankly… too much pain, cut out everything nonessential and I just retreated too much. But there are other factors to our personality and how we cope with chronic illness. I used to be a very negative sarcastic person and very prone to melancholy. So when coping with fibromyalgia when I moved away from home was very difficult as that was my automatic response… very negative, very melancholy. I had to adapt and bring forth that other side of me that was very laid back and goofy… and that side of me counteracted it very nicely and once I coped with the negative thoughts I really handled it well. However when chronic migraines really amped up that seeped back in. Nevertheless I have often reflected on how my personality caused problems with coping initially, how it changed over time in positive ways to adapt to my illness in various ways and how later again it caused similar problems with coping. How being introverted I respond well to certain things, but also retreating too much is too… easy. The second factor I think about is how we develop our impressive Facade of Wellbeing in order to function in the world… for various different reasons in different contexts. And mine initially was very much a joking, goofy facade to help me feel better. And it just worked in other contexts to mask the pain from others so very functional. And I find it very interesting that the facade then becomes part of Who you Are even though it was initially just designed to help you function and hide the symptoms and pain from others. We change. We adapt. So our illness of course changes who we are but many of these things help us adapt, although some of them initially did not and that is how we learned to cope and over time we can see the positive changes.
So when people say we are not our illness… in some ways we are. It profoundly impacts us over time in many subtle ways that define how we cope, how we interact with others and how we perceive reality. It amazes me at times how we adapt to chronic illness over time. There is nothing wrong with understanding that it impacts our reality. It is an intricate balance reality that we constantly change as we develop ways to cope. I think of philosophers and how they talk of Being in the World… and for us it is Being in the World with Illness. Being in Pain. There is an impact to our reality on multiple levels.
Here are some of the things I have written at one time or another you can check out if you want. The Fogland is a funny one but really does go into all the various cognitive dysfunctions we can experience. The reflective on on chronic pain is more the difficulties and some of the ways it affects us. The last one, Philosophy of pain, breaks the pain experience down into its components and it quite interesting really. The short essays are on as I said those things that have fascinated me… I might write longer reflective pieces on of these days, but these ere designed to be short ones.
Reflections on Chronic Illness: All about the Pain “I have fibromyalgia and chronic migraines both of which are chronic pain conditions. So I’m going to talk about the pain, which is something people intuitively get. I say migraine; they say ‘ouch that sounds like a bad headache.’ And then I say ‘I’ll give you a bad headache’ in a low threatening tone. You see while people fundamentally understand the concept of pain, unless they have felt a great deal of it for an extended period of time they are not going to get chronic pain. It’s a members only club I’m afraid. It is like understanding what a number is and then trying to understand what counting to infinity is like. Eventually it will just boggle your mind. Pain without an end boggles the mind.”
Fibromyalgia Fogland: The Adventures of Cognitive Dysfunction “Fibromyalgia(FM) is a chronic pain syndrome with widespread pain, fatigue, sleep dysfunction, cognitive issues and abnormal pain processing. It is a complex syndrome that can include comorbid conditions. While the syndrome is defined by the abnormal processing of pain we should not ignore the variety of cognitive impairments that develop as they have a strong impact on quality of life. The top three most mentioned fibromyalgia symptoms are pain, sleep dysfunction and, er, what was that third one? It is on the tip of my tongue. It is like my mind is in a fog and I can’t quite think of the word. Oh, right. FibroFog. Which are actually a broad spectrum of cognitive symptoms but usually people are referring to the concentration issues and memory problems. Let’s just say cognitive impairments. Or let’s just say my brain is leaking out my ears. Whatever works. Point is people gloss over this array of symptoms but to those of us who have fibromyalgia it is a serious concern. Maybe because we need our brains to do things like think. Something to that effect. Now some of that is due to the impaired sleep but studies have speculated many of the issues with cognitive impairment might actually have to do with pain. Like being in pain somehow impairs one’s ability to think and process memories. Weird. Maybe we should test that by getting someone with a broken leg to do calculus or remember lists of objects. I suspect there is something to do with that theory. Let me just explain a little of what can go on here shall I? Keep in mind, like with all symptoms the cognitive issues can vary over time and they vary from individual to individual of course. No firm guidelines with the syndrome.”
Philosophy of pain This is actually based on a paper I once wrote in University so quite some time ago but reflects on how I conceptualized the chronic pain experience.