Chronic illness, two decades later

Every April, I think about writing this post. Or one like it. But I don’t, because I don’t want people to think of me as a sick person – either because then I’ll get pity, skepticism, unwanted advice or because I’ll appear weak and incompetent and worry no one will ever want to hire me again.

Most people don’t know I have a chronic illness. I only talked to my kids about it recently when it started affecting their lives, and they’re 10 and 12 years old. It’s something I deal with quietly, in my own ways. But my body has become loud lately and insistent lately, and I think telling my story and dealing with my past is part of it, so here goes.

The beginning

I first got sick in April. I thought I had the flu. But it was worse than the flu. And it didn’t go away.

At some point, my Mum took me to the doctor. He was terrible, both as a doctor and a human being. He kept trying to date my Mum, despite her repeated refusals. He yelled at me in his office when I became upset after waiting over an hour for a note from school excusing my absences. But he was the doctor who quickly assessed what was wrong and handed down the diagnosis of Chronic Fatigue Syndrome. It was something of a miracle – almost no one was getting accurately diagnosed on the first try in the ’90s.

I got the news on the phone, sitting in the green room backstage in my high school auditorium.

“There’s no treatment. There’s no cure.” (Also, you can give it to your classmates like the common cold [not true]. This made me an instant pariah.)

I was 17. And that was 24 years ago.

I felt like the rest of my life was ending, before it had even begun. I felt trapped in a nightmare. I used to describe it to people as, “Imagine you have the flu and a horrible hangover and it never goes away. That’s how I feel every day.”

The journey

The worst did pass. Months went by and I managed to finish my junior year of high school by going the first half of the day one day and the second half of the day the next, alternating days. I somehow maintained my grades: As in everything except a B in Alegra 2 Honors. Over the summer I survived a summer school PE class (the teacher let me walk the mile) and slept a lot.

I went back to high school for my senior year, finally able to take the art classes I’d always wanted to. A month in, while my Mum was in Germany on a business trip, I had a relapse. I spent the rest of the quarter at home in bed, failing my classes, then enrolled in hospital-homebound schooling where I took classes via telephone with other kids who were also at home in bed or in the hospital. Someone from the program came to my house twice a week to pick up my coursework and deliver more worksheets. It was boring and grim and the classes were inexplicably held at 7:30 a.m. I hated it, but I was determined to graduate.

I graduated high school (6th in my class, despite those Fs). And, desperate to get out the South Florida town we lived in, continued by plans to go to the School of Theatre at Florida State University. It was the farthest I could get away from home while still benefitting from in-state tuition.

As a non-US citizen at the time, I wasn’t eligible for many scholarships, although I applied to everything I could think of. I had one scholarship interview, with a panel of women. One of them asked me, “If we give you this scholarship money, can you guarantee you’ll finish college, with your illness?” I couldn’t. I didn’t get any scholarships.

I lasted a semester at FSU before I had another relapse. I limped through the rest of the year, literally, with a cane to help me get to classes as I was so weak. After researching and reading a bunch of medical texts from the university library, I went on an elimination diet to try and improve my health.

I dropped out of college after my first year and went to live with my first husband (who I’d married during the year, the process of which had undoubtedly contributed to my relapse). With some wedding present cash from my dad, we bought an Airstream trailer and 10 acres of remote mountainside in western North Carolina.

The short version of that story (the long one involves a Jeep engine catching fire, an intentional community and letters to the editor in the local paper calling me a devil worshiper) is that I lived in a beautiful hemlock grove on my property, in poverty that was near starvation at times, and eventually got better. I was approved for Social Security Disability on my first try and the regular pittance of income, combined with health care, some good antiviral supplements, and lots of time in nature soaking up the forest, healed me.

I got a part-time job at the local paper (the same one with the crazy letters to the editor) as a typesetter, which became a full-time job as a journalist. I loved it. I was a writer! I left my first husband and, a few months later, left North Carolina.

After that, I worked, I looked after myself, I respected my boundaries and limits (mostly) and enjoyed my 20s. I got married and had grew two fantastic kids with my very own body. At some point along the way, another doctor diagnosed me with Fibromyalgia, which is the diagnosis I kept as people responded to it better than they did to Chronic Fatigue Syndrome.

I had upcycles and down cycles. At times I’d go to the doctor, hoping for ways I could be healthier and make my life better. Some were helpful, others weren’t. Sometimes they’d come up with a gem, like testing my Vitamin D levels and finding them low. So I added supplements. I exercised. I got enough sleep. I went on a gluten-free diet. I reduced stress (and got divorced again). I did all the things.

Over the years, I tried many different types of practitioners: homeopathic, naturopathic, chiropractic, acupuncturist, functional medicine, medical intuitive, etc. I studied energy healing and became a Reiki master. If there’s an avenue of alternative medicine you’re thinking of right now, I’ve probably tried it or looked into it. It has been 24 years, after all.

The present

Which brings me to today. The day after I get a second opinion that also says I have post viral fatigue and a relapse of CFS/Fibromyalgia. And there’s still no real treatment and still no cure.

That’s bollocks.

I understand why I feel so frustrated and despairing at the idea that I’m back on the path I was over 20 years ago. I remember how hard it was. And in the meantime, I’ve tried all the things. I’ve built up to a cupboard full of supplements to help maintain my health. Plus, I’m not a teenager in school. I’ve got kids now. A business. Another husband (#3 if you’re counting).

I’ve also got a finely-tuned intuition, one I’ve been developing all these years and that I’m ready to finally, really, listen to.

Months ago, I knew I needed to release some of the work I’ve been doing with the spiritual center I attend. I’ve been scheduling the music there, performing and leading the songleaders for four years. Fortunately, I listened, and have worked with the Spiritual Director to find other people to take on those roles, for the most part. I’m taking a hiatus. I’m giving myself permission to let it go on without me.

In early winter, during meditation, I heard that I was supposed to set down the pieces of my business, Alight Intuition, and let them rest. I finished teaching the 8-week class I was in the middle of at the time and am taking a break from teaching more. I put a notice on my website that I’m not taking on new clients. I’ve put my mediumship development circle on hiatus. I turned away a potential new client today, so I can focus on my health.

I’m not good at surrendering into rest. But I am, anyway.

The path forward

My plan is to listen to my body. I’ve been working on my relationship with my body for some time: forgiving it for years of sickness and pain, accepting it for how it is, loving it for everything it’s allowed me to experience. We’re in a good place.

As I was falling asleep last night, I made a pact with it to trust my body to guide me back to wholeness. So that’s what I’ll be doing.

I don’t think what I’ve been told is the whole story. I think the root causes of my symptoms need to be addressed and I have a good idea of what they are. I’ll write about that part of the journey another time. For now, my body is telling me to go back to bed.