It started in 2011, after I finished my coursework for my master’s degree. I was out sick from my job for two days after, because I was so exhausted. I thought taking it easy for a little while would help. But days turned into weeks, into months… a year.
Four in a few weeks.
I have been sick for four years. And officially I have no diagnosis. When I started going to doctors in 2013, because things had been going on for a year and a half by that point, I got nothing. I asked for thyroid tests, since my symptoms were in line with hypothyroidism. The first doctor, a GP through my employer’s health center I had seen once before for a few minutes he summer before, gave me a prescription for blood work and told me that my BMI declared me obese. (Just for the record, BMI is junk science.) I couldn’t even respond because I was so exhausted that day, plus I was shocked to hear a medical professional still spouting this nonsense. The test showed me barely in the range of hypothyroid territory and the doctor offered two options: medication or a referral to an endocrinologist. I opted for the latter. Long story short there, my thyroid levels went into “normal” range by that visit and I got no help. Just had my weight cited as the cause of my problems, even though I kept telling them that the weight gain did not start until 6 months after the exhaustion set in.
(My real suspicion is that the issue is more about my adrenal glands but that is not a readily accepted diagnosis in the U.S. This isn’t an invitation for anyone to comment and discuss whether or not I have any health problems. You’re not living my life in my body.)
When you have chronic illness, even when “mild” like mine, it takes over your life. I measure my days in terms of how much energy I have to do my paying job and whatever is left over after that. Because I have no diagnosis, I am ineligible for FMLA. So despite the fact that most days I have some level of ongoing fatigue and get sick easier, my missing days for illness means I get notifications from the human resources department.
Being sick like this can turn you into an activist, even if only for the cause of your own health. Many chronic health problems aren’t as understood as they could be, or assumed only to fit into a narrow field and anything outside of that box is unrelated or inconsequential.
I have been sick for four years, and the only official help I have been receiving is from a nutritionist. As I was trying to get a formal diagnosis I spoke to the person who is now my nutritionist, who before was “only” a friend and fellow polytheist. Working with her, cutting out gluten (I do not test positive for Celiac disease, and I know the school of thought saying that anything other than this diagnosis is not a gluten problem, but the reality is that when I eat wheat I get stomach pain, bad headaches, and moderate to serious cognitive impairment), taking supplements and herbs daily to support my body, and focusing on real, nourishing food, is the reason why I’ve been able to see any sort of improvement in the last two years.
It’s also expensive, and I fully acknowledge a high level of privilege that I can afford everything. I can afford to buy a pound of, say, ground maca root which comes out to be cheaper per “dose” but means a periodic higher layout of money. It’s not just a matter of good budgeting to be able to afford them. Yet somehow we live in a culture where it is too easy for people to go without essential health care and medications because somehow being well and whole is only meant for the elite.
I have been sick for four years. In the past year I have finally acknowledged to myself just how much of a toll the years have taken, and have had a year of surrender.
To explain, my primary tradition is Kemetic Orthodoxy. For us. the new year starts in early August. A tradition of the temple is to receive an oracle from the Goddess Aset for the upcoming year. Normally, She would declare one or more deities to be over the year and having an influence over happenings. This past year, however, has been Her’s. In preparing for the coming year, some of us in the temple have been talking about what our years have been like. True to Aset’s nature, it has been a shapeshifting year, being years that were needed on some level. I surrendered, admitted I have pushed myself too hard even in this bad health. That taking care of my mom through the cancer that took her life was a strain. That I have had to put much of my spiritual and magical practices to the side just so I can handle the day to day of my life without digging the hole deeper. It has not been simple but it is showing results. It’s also not just about me.
As a culture we do not give much to rest, relaxation, not-doing,. We’re expected to produce, be active, give much of ourselves to paying jobs despite the continued lip service given to strong families. We’re not robots and we’re not all going to respond in the same way to everything life throws at us. If we can’t “hack it” we are failures on an individual level and punished for it.
I have been sick for four years.
And no one is more tired of hearing about it than I am.