Reading this blog post from a Mighty contributor named Amber, I realized that I see this motif in the writing of the chronically ill over and over again. Then I started to get excited. Not because we all have to go through this terrible process with its 5 clear steps one can cha-cha back and forth through for years, but because I realized I’m one of the ones who finally has the privilege of understanding what’s on the other side and why being on the other side is a major advantage.
Like Amber, who has sjorgren’s, I too had to go through all the same steps to also make the same conclusions, but we each arrive at these in our own way. This is called mourning and that’s how mourning works. Most of us, like Amber and myself get mired down in the denial phase. This can be an especially long phase if you’re having difficulty being diagnosed, being denied diagnosis altogether, have a rare and/or contested disease within Healthcare/society and/or you don’t get any support from family and friends. I fall into all of these categories, making for a particularly sticky wicket that’s further complicated by a history of childhood neglect, abuse and resulting issues with PTSD and severe self-esteem that were all too happy to be reawakened by the trauma brought about by illness.
As I began writing this a few weeks ago and only just rediscovered it (the fun of cognitive dysfunction; you find things you were working on of which you have no memory) I’m publishing this a bit out of order, but it’s important, SUPER IMPORTANT so I still want to make the point: You have to get through this grieving process to be ready to move forward with life AS IT IS so you can BEGIN TO HEAL both EMOTIONALLY AND PHYSICALLY. I believe this 100% because I am living it.
For years all I did was decline, decline, decline, straight into a bedridden mess, no matter how hard I tried, no matter what advice I followed, no matter what regimen of supplements I took. Some of the things I was doing were the same things I am doing now. What changed most was that I finally accepted that I wasn’t going to find some quick fix or easy cure. I have a chronic illness and that will never change, whether they can give me a diagnosis or not. It will always effect my mobility. It will always cause me pain. It will alwsys hamper my ability to live, work and play and it will always threaten my very existence, just as it always has.
This realization and full acceptance has allowed me the freedom to stop fighting against my own body and instead begin to just observe and listen to it. Begin to respect it fir the boss it is; a big deal for a woman who has always been desperate for control (one of those not so lovely remnants of the past I never quite kicked). Only once I stopped trying to force it to obey my will could I really begin to understand what it might need. All those years of research and jumping from one thing to the next wasn’t going to do me a damn bit of good if I wasn’t respecting and listening to my body as a whole (this includes the mind and spirit as these things are inseparable).
My biggest mistakes?
- I kept missing the warning signs from my exercise intolerance and as soon as I started to feel better, I started walking, doing PT exercises, bowling and even occasionally sneaking in a good old fashioned hike (and there’s not a flat trail in the whole of Appalachia, let me rell you). Yes, some of it was doctor recommended, but it went against everything else I’d read on my condition.
- I kept missing what was or wasn’t effective because I was too impatient and trying too many things at once and of course doing too much activity and not only triggering my exercise intolerance, but injuring multiple joints every day.
- I was focusing on all the wrong things. As soon as there was the slightest improvement, I would begin to update my resume and job hunt, knowing deep down how ridiculous it was. Why? Because I wanted to prove to everyone else I wasn’t the lazy loser I felt they were judging me for. Because I felt like we needed me to for financial reasons and because I felt like it was my responsibility as an adult. I was worried about everything BUT my health.
- I was harder on myself than my harshest critics. I judged my own character for my body’s failings, every time. Each sign of physical decline was literally another nick to my self-esteem and steeped me further in my depression. I detested myself and no one could convince me that it was beyond my control.
Sadly, emotional stress is a huge trigger for autoimmune disorders of all kinds and I probably was contributing to the severity and length of my flare ups. I neither know to what degree, nor do I want to know. Measuring such things is tantamount to playing the blame game and I can’t afford to go back there….no, I simply won’t, not now that I’ve finally found my way out of that abyss.
As I discussed in yesterday’s post, I can’t say for certain which came first, the changes I came to in acceptance and pushing away my depression, anxiety and anger or if I just got lucky and my dysautonomia was healed enough for me to begin seeing reason again, but I do know I wouldn’t be where I am emotionally or physically without getting through this mourning process, reaching acceptance and being able to move forward in healing mind, body and spirit together.
Whatever can be said for Western medicine (not much in my opinion anymore), they really need to eliminate the idea that the mind or body can ever fully be in harmony without the other. Eastern medicine has had a beat on that score for some time and they are dead on. Newer really doesn’t often equal better, a lesson that proves itself over and over again to me, especially in the realm of medicine.
If you’ve made it to the point of acceptance, congratulations! Not sure where to go next? Still need some help on getting to the next steps in your emotional development? Take a look at these posts Healing the Spirit or Affirmations and Effective Journaling for more ideas on what to do next.
Need help with symptoms? Take a look at this post What Got ME Out of Bed for some helpful solutions to common problems with a number of autoimmune illnesses.