I experience, in this life I am living, what is referred to as Invisible Illness. Not just one, but more than one. I know that many will never understand what it is to go through such a thing, and for that they can be and should be grateful.
A typical day for me....I wake up and head for a glass of water.....I know that my body has been hard at work, because the way in which I felt as I fell asleep or "passed out" is not the way that my body feels as I wake in the morning. I know that there has been repair, healing, and recovery, because most every night I go to bed in physical pain. I then connect with gratitude in prayer...glad to be awake another day. After that, it turns into a flurry of chores and getting my family ready for the day and then out the door I go. I head out to work, exposed on various levels to chemicals and "fragrances" that cause me a variety of pain and stress. I have been coping knowingly with managing how I deal with this exposure for just over 10 years. This is what the management tends to look like.... I reduce how deeply I breath, breath through my shirt or a scarf (and now a mask), reduce how much I choose to speak, start pacing and moving, position myself "downwind" the source of the "smell" or trigger, drink water, and find myself to a fresh air source as quickly as possible. This has improved my ability to listen, has grown my compassion for others, has increased my observation of others, and...through coping for my benefit, has also brought about a huge level of backlash. It's funny that the backlash and personal attacks seem more draining than the temporary exposure to chemicals and toxins themselves. At the end of the day I feel so drained, that most times I will crash on the couch as soon as I get home. If I am not so drained, I will go through a process of removing all my street clothes, wipe down, get into my PJs, chugging some water with some form of detox supplement or practice (magnesium, zinc, spirulina or chlorella, etc) and then grab my boys and cuddle and kiss and pray and then drift off into sleep.
I have returned to working in the work force in a public setting just over a year ago....and before that, I was home with my children. Each week before I had returned to a "conventional" workplace, I would expose myself knowingly to a certain level of "fragrance" exposure with the understanding that I had a few days at home in order to heal and recover. Only a few in my life could fully witness (and accept) the level to which this was an aspect of my life. Before I, myself, even fully accepted that the reasons I was narcoleptic, with chronic migraines, severe shooting and sharp back and joint pain, inability to walk properly, etc. was due to my constant exposure to the fragrances (synthetic) and chemicals that I had in my home and even wore on a daily basis. I had so many issues....and no real solutions. My doctor had tried all that he could and it was written off by various professionals as overwhelming stress. No prescriptions would work and I was diagnosed as clinically depressed with environmentally triggered asthma and allergies as well as with arthritis and Graves disease. Now however, in those processes of being diagnosed, I had discovered that I was unbelievably healthy (my doctors was upset as they were hoping to see something to connect in my tests that would give more of a diagnosis). Even a naturopath indicated that my body was very efficient at healing itself and that I indeed was hypersensitive to chemicals in the environment.
I spent a LOT of mental time and energy second-guessing this diagnosis and experience. I would PUSH it, over and over, and over again.....making myself appear as normal in situations, in spite of the pain and struggling, and to find out that no matter how I choose to "ignore" the symptoms they were there. I believed maybe it was all in my head...maybe I was having a negative emotional response or a bad attitude or heart towards someone or a smell....there has GOT to be a reason that I am not "normal" like everyone else....why am I NOT like everyone else? How come I am this rare and unfamiliar thing among the masses? (can you see how these thoughts and questions have a toxicity of themselves?) Well, as it would turn out, I was NOT the only one asking these questions....many, many, many people keep asking this of me....assuming I am a liar with anything I have to say and despite the diagnosis (my doctors were also seen as lying), I am/was a liar. I am hiding something....and so be it. THIS, more so than the physical experience, is what brings more grief and pain....and in that, that is where I turned to God's compassion and in that space, I grew in my compassion for those that silently suffer AND became the voice for those that felt shame to share that they are less than "normal" from the masses.
I have met some BEAUTIFUL people through all of this...those whose hearts overflow with compassion for others...that accommodating for the specific needs of others is an honour for them to share and perform. Willingly embodying the meaning of hospitality. Those who have struggled so deeply, beyond what my own experience has been, and that are brilliant and giving to others in great and transformative ways. And I would have never imagined that the levels to which I experience pain is a lesser portion of what others around me go through ( I would never wish others to experience the pains I have gone through so that they would understand...so that I have a level of understanding of the pain that others go through is a marvel to me...I am in awe of the strength of others).
So why share this now? Because, I choose to...and while I am still in recovery mode from choosing to be in an annual event a few days ago now where many individuals were scented and I found myself using many of my coping mechanisms, I am still experiencing the burden of it today. In those moments, I chose to situate myself in areas where I would experience "less" pain and reaction. And how many around you may be doing that "silently" as well? You will never know, but know that it is happening as I have discovered along my journey's way. And in other areas of my life where scent is a concern for me on a more regular basis, I choose to be in those spaces with a level of safety, so I can be more fully present with my energy and attention and to be able to process more clearly. It is not something I choose to explain or justify....it's not an excuse from one to the other, it's just how I chose to be in those moments in my life. I would choose to be fully mindful and present in all the situations I approach in my life, but I will admit, some I am chose to attend to more than others.
The thing that I have received the most from all of this is my own compassion for others. "Compassion is the feeling of empathy for others. Compassion is the emotion that we feel in response to the suffering of others that motivates a desire to help." With a profound awareness of the suffering of others through my own painful experiences, I have grown into a person I would have never imagined to be....loving without deep judgements or conditions, desiring to bring peace and love and joy into the lives of others in spite of where they are at, offering true and intended connection with those around me, AND not skulking off into a corner or the darkness when I am experiencing pain, but allowing myself to serve to the joy and connection of others through it. It would be nice to not have to experience such pain daily, BUT if this is all that I have to experience as physical pain in my life while still being able to bring something of value into the lives of others, then I am, again, grateful, for this great and wonderful gift and how it serves me and others.
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