Please help spread the word about malfunction of the autonomic nervous system and the many chronic conditions it can cause. There is no cure for dysautonomia, it is an invisible illness, and from day to day and person to person the symptoms vary widely as does the severity, so life with any of these illnesses is a roller-coaster, to say the least. Some people are just dizzy all the time and may not even realize that it isn’t normal, and severely affected individuals faint every time they stand or even sit up for a period of time, sometimes just a few seconds.
No one bothered to teach me about the autonomic nervous system. In a perfect world, doctors would explain these things to patients who are experiencing classic symptoms of ANS malfunction, as I am, and they would explain just how involved the ANS is in so many processes throughout the body. Normally, when you are in pain or experiencing stress, your autonomic nervous system ramps up your blood pressure, makes you sweat, and elevates your heart rate. When the pain or stressor is gone, your ANS should quiet right back down again, returning to baseline (and you with it). Yet, the ANS can become part of a long-term issue like chronic pain as well. It can become so agitated that it is constantly hyperactive; constantly on. This can exhaust your body and cause a cascade of other symptoms, some of which may be unexpected such as chronic fatigue, gastroparesis, severe migraines, adrenal fatigue, increased chronic pain, and immune issues.
First, it’s important to understand just how much the autonomic nervous system matters. It is involved in most involuntary actions in the body, such as heart rate, blood pressure, digestion, kidney function, and temperature control. Imagine never being the right temperature; always being too hot or too cold. When I say “too cold” I don’t mean in a mildly uncomfortable way, the way it feels to be out in the cold too long for a regular person, instead it can actually be quite painful and feel like it’s coming from the inside out, stinging and zapping your skin anywhere it touches articles of clothing or a draft hits it. Standing up with dysautonomia is like climbing Mt. Everest on bad days, and the constant headaches and digestive issues get old, fast.
Here is a pretty good overview of what Dysautonomia is, who gets it, what treatments are available, and other useful tidbits of info about ANS malfunction, so you can help spread awareness this month;
Image by Rachael Rodriguez.
September is Chronic Pain Awareness Month
I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the real bravery of the men and women who wake up each and every morning in unending, unforgiving pain. In addition, I desire so much to ease the transition for newly diagnosed patients with chronic illness through education, advocacy, and compassion. As a community of chronic pain patients one of the most pressing issues is to get a realistic, non-romanticized version out to the public of what it is like to be ill and not be able to rely on your body, or even you brain, depending on the day.
I am the same person I was before my illnesses took hold, but I am also different. I speak differently, and I speak about different things. I spend most of my day distracted by pain, and looking for a distraction from it. I am sure that the people around me no longer believe all the crazy things that are happening within my body can possibly be happening to one person, all in one month, and that is part of the stigma of chronic illness. I too didn’t understand what it meant to look fine on the outside but deal with so many problems within your body that even basic work was impossible. Five years ago, I would have pointed at someone like me and said “oh, she’s exaggerating, it can’t really be that much worse than my _____ (insert: back pain, flu, headaches, anxiety, arthritis, whiplash injury) and I worked though all of those things” but I was wrong. I was so terribly wrong that I guess life had to prove it to me in a pretty brutal way. How does that saying go? Judge not, less ye be judged?
I figured, especially because I was one of the judgmental voices, the harsh and unforgiving “them” who could never understand chronic illness, and now I understand all too well, maybe I should be one of the ones who helps shed some light on the many unseen and unspoken hurdles facing patients with a myriad of rare, invisible, incurable, and terminal illnesses. I’m honestly guilty of still trying to hold myself to standards that I cannot achieve with my illness in full force like it currently is. Hopefully in the midst of promoting acceptance and support from caregivers, relatives, friends, significant others, healthcare professionals, and the media, I can also sway some fellow spoonies to take it a little easier on themselves too. If you are dealing with daily pain that will not relent, try to gently remind yourself that you won’t gain any ground by ignoring your symptoms.
The road to being okay with your new life as someone living with chronic pain is paved with research, acceptance and acknowledgment of your symptoms. For those of you who are not in chronic pain, likewise, researching your loved one’s disease, then verbally showing acceptance and acknowledgment is the best gift you can give someone who is suffering. It is amazing what hearing the words “I believe you” can do for the soul. It is like being wrapped in a big soft blanket and having a hot cup of cocoa placed in your hands on a cold day.
Never forget that you own the right to tell your story as raw and honest as you feel comfortable with. You aren’t just doing yourself a favor by getting it out of your head and into writing, you are promoting awareness by removing the myth from your illness. Your pain may be invisible, but that does not make it any less real, any less scary, or any less debilitating than a visible injury. We spoonies all have a lot of people to prove wrong, from the 1/4 of primary care physicians who believe most of their chronic pain patients are faking, to emergency rooms that are ill-equipped to deal with chronic conditions, to unsupportive families who refuse to do their research, and of course general stigmas against pain patients that have existed for ages. These are all barriers to effective research, communication, and seeking out treatment. But they are obstacles that we as a group can overcome.
Raise your voices, tell your triumphs and your horror stories alike, others need to see what we go through on a daily basis and speaking out helps to break down those barriers and create road maps for understanding the whole of chronic illness, not just the symptoms, but the underlying causes and the body-wide effects created by living a life in constant pain. I know it is difficult, but only when we are not afraid to share what we are going through will we transform the silent suffering of people with invisible illnesses and chronic pain into a growing understanding that we too deserve to be treated with the dignity, respect and even admiration for what we deal with on a daily basis. It’s not just an idea, it’s a necessary change and we have the numbers, the intelligence, and the determination to make it happen.
Click on the thumbnail below to go to the larger version of my painting for Chronic Pain Awareness: