Undivided

by Vicky Beeching

  The doctor suggested I think of my energy in terms of “spoonfuls.” If a healthy person had twenty spoonfuls of energy at their disposal every day, I only had about five. He compared it to being a smartphone with a faulty battery; you can plug it in every night, but it never recharges beyond halfway. He said, “All I can advise fibromyalgia and ME patients is this: plan your days very carefully so that you have enough spoonfuls to do what’s essential and you don’t overexert yourself. These are very limiting, life-altering conditions, and you’re already seeing that.”

  Walking out of the clinic, I became tearful, thinking: This is not the life I’d planned for myself after coming out. I’d hoped everything was just beginning for me—it was supposed to be the part in the “movie of life” where I’d come out and the sadness and struggle ended, the moment where I drove off into the sunset to live happily ever after. But clearly it was not going to be that way. My difficult journey, with its shame, anxiety, and adrenal fatigue, had left me with yet more damage and fallout.

  I picked up the phone and called Tanya Marlow, a friend I’d known since high school. We’d been in more contact since I’d come out; she’d seen how intense the whole experience had been and wanted to make sure I was doing okay. It was lovely to have her back in my life, and we had many hilarious phone calls reminiscing about our school days.

  But that day the call was a tearful one. I knew she’d been diagnosed with ME years earlier. Her illness had begun at the age of seventeen when she’d had glandular fever, or “mono,” and her condition worsened substantially in 2010 when she gave birth to her son. Now she was bedbound for most of each day, and her husband, Jon, pushed her around in a wheelchair.

  “What did the doctor say?” Tanya asked, knowing I’d just gotten back from my clinic visit.

  “They said it’s fibromyalgia and ME,” I replied. We both paused in sadness and silence.

  Tanya had mentioned several times over the last few months that my symptoms seemed similar to hers, and now I had an official answer. I called her a lot in the weeks ahead, as I tried to figure out how to understand these conditions, and if there was anything I could do to improve.

  “Go slow and think long-term,” she said. “Most people with ME never regain their former energy levels fully, so in part it’s about learning a new, much slower pace of life.”

  Slowing down was the last thing I wanted to do. I had lived all of my life in the closet. Now, after finally coming out, I could be myself. I had a million plans. I wanted to work with churches in the hopes something would change. I wanted to be a visible role model on TV and radio, so teenagers had more examples of being out and proud. I was ready to fly, not to crash to the ground.

  Although I had the diagnoses, my doctors were still keeping a constant watch as my symptoms were getting worse not better. CAT scans, ultrasounds, several MRIs, and countless blood tests followed. The sharp decline in my health left me struggling emotionally; I was having to stay home most of the time, and I couldn’t see the network of friends I’d been building. I was also worried how this would affect my income, as I needed to work hard to rebuild a new career as a speaker and a writer. I grew increasingly despondent in this isolated environment; it felt like a blanket of sadness fell out of the sky and covered my head and my heart.

  My doctor monitored these ups and downs, eventually diagnosing me with depression and anxiety. He suggested I try taking antidepressants. It took trying several different medications for us to find the right one for me, but once we had, I found it helped a great deal. I’d never imagined that I would need antidepressants after coming out as gay, but I tried to take it in stride. The tablets continued to help, and I remain on them today, as I’ve experienced the way they can lift the worst of the sadness and anxiety.

  Utterly depleted, I cautiously learned my new limits: initially I was only able to spend three or four hours out of bed per day, and the remainder of the time I had to be flat on my back, asleep or at rest. Every grain of energy was spent trying to do freelance work to keep a roof over my head. I only saw friends once every two or three weeks; other than that, it was just phone calls and Skype. I started eating on plastic disposable plates, as I had no dishwasher and washing dishes by hand was one more task for my weak muscles every evening.

  I tried every so-called cure that was recommended for fibromyalgia and ME: dietary changes, acupuncture, colonic irrigation, “lightning” style therapy, increasing exercise, doing no exercise, NSAIDs, muscle testing, iron infusions, CBT, herbal supplements, and antiviral protocols. Every penny I had left in the bank I spent on private treatments, but nothing made more than a minor amount of difference. Barely able to make ends meet financially, and living in a tiny rented room with no space, made things worse.

  With a doctor’s instructions, I learned to give myself B12 injections, despite my lifelong hatred of needles, and these were the one treatment that helped boost my energy. Thanks to the B12 injections, my brain fog disappeared, which was a huge breakthrough and one that remains today. But physically, my capacity still stayed way below that of an average person.

  Tanya often phoned or Skyped. We tried to keep each other’s spirits up about having such debilitating illnesses, and we cried together in the moments that made us despair. It meant so much to have someone else who understood what these complex conditions were like and how misunderstood they seemed to be by mainstream doctors. Chronic illness and disability are things the church rarely speaks about. Tanya felt this needed to change, so she wrote about her experiences with ME in a blog called Thorns and Gold, exploring the ways faith persists through the darkest times. I loved reading her reflections on suffering, doubt, hope, and perseverance; they really helped.

  Doctors told me one of the toughest things about fibromyalgia and ME was that they seemed like invisible illnesses to other people. If you had a broken leg, everyone could see your leg was in a plaster cast and understood you were injured. But internal illnesses related to the central nervous system, and to muscles and connective tissue, were things people couldn’t see at a glance. They couldn’t tell that you were unwell.

  The strangest thing was that I could almost function at my previous, normal, levels of energy in short bursts. Having chatted with others with the same diagnoses, I discovered that this pattern of having limited energy and then crashing was very common. (I also learned that the most severe fibromyalgia and ME patients were too bedbound to have even one hour of mobility or energy per day, which helped me feel more grateful for my capacity; others had it far worse.)

  As months passed, with gradual improvement, I could just about manage a full day of freelance work. Afterward, though, I’d need to go to bed ridiculously early, and the following day needed to be totally empty so I could crash and recharge. It was a strange juggling act, weighing exactly how much energy I could spend per day and per week. I had to plan my calendar with military precision. The toughest part was when people only saw me during those limited energy bursts, on days when I appeared to be on “top form,” and didn’t understand that afterward, I would have a total energy crash, feel awful, and be in bed for twenty-four hours to recuperate. When I couldn’t meet people for lunch or coffee, they took it personally, because they’d only seen the briefly energized version of me, and didn’t understand how ill I was behind closed doors.

  I could manage TV appearances, radio interviews, and giving keynotes, but they all had to be carefully planned: I couldn’t overload myself with too much per week, and I needed recovery days to balance out the work days. Learning to pace myself was tough.

  When I mentioned my health issues online, some Christians told me these diagnoses were God’s judgment on me for pursuing a life of sin. I even received messages saying people had prayed that God would bring a crippling disability into my life when I came out, as proof to everyone that I was promoting a shameful lifestyle. This made it all even harder to handle.

  Despite that abuse, I continued my social-media posts because I wanted to
speak out about chronic illnesses and what it was like to face them. Interestingly, I heard from an unusually large number of LGBTQ+ people who had autoimmune diseases, fibromyalgia, or ME. I couldn’t help thinking that, since many of us had experienced difficult journeys with discrimination, shame, and rejection, perhaps stress had led to a disproportionate level of these illnesses in the LGBTQ+ community.

  Doctors told me countless times that all these conditions had somewhat mysterious causes, and that stress and trauma made people susceptible to them. Such a high number of LGBTQ+ people got in touch saying they had these health issues that it seemed perhaps there was a correlation. I had no statistical data beyond my own interactions with people online, but it struck me as unusual and worth further thought.

  31

  “We’re an imprint of HarperCollins, and we’d like to sign you as an author.” The words were a wonderful surprise and a bright spot during all the struggles with my health. The San Francisco publishing house wanted me to write a memoir about my life so far: growing up in a faith community knowing I was gay, then everything that had led to my decision to come out, and how life had been since. HarperCollins in London also wanted the rights for the UK and other territories. I said yes and got started.

  My work portfolio was shaping up with keynotes, op-eds, radio, TV, and now the book. I paced myself carefully, took pain medications, and ensured I stayed within my energy limits per week. I’d always prided myself on being true to my word, so I was glad that by being fastidious about only saying yes to the right number of commitments, I never canceled a single work booking due to my health (and I never have, to this day).

  Campaigning for LGBTQ+ equality was becoming a big part of my life. I was especially passionate about seeing a ban on conversion therapy—the attempt to turn gay or bisexual people straight. Another major focus of my work was mental health awareness, breaking the taboos around depression, anxiety, and other conditions.

  I dearly hoped that the church would change its views on same-sex marriage. The most effective way of working toward this, I found, was having one-to-one conversations with pastors and leaders who’d known me for years, encouraging them to rethink their theology. I discovered this quiet method of campaigning seemed to have a lot of impact; pastors in the UK and US were actually shifting their theology as a result of those chats, and I knew grassroots change would be the most likely way to tip the balance of big denominations.

  A popular LGBTQ+ magazine saw everything I was doing and asked me to become a monthly columnist. This was a relief, because, combined with the book, I now had reliable money coming in each month and could just about keep a rented roof over my head.

  Keynote invitations were also increasing. Corporate executives wanted me to come into their offices and talk about “diversity and inclusion,” which was a growing agenda for businesses. Being careful to pace myself, and allow for several rest days each week, I managed to make this work. I spoke at law firms, banks, and insurance companies—they were household names in the business world. In preparation for them, I voraciously researched information on HR diversity protocols and best practice, and my knowledge grew. A couple of firms hired me as a freelance consultant on diversity and as a coach working with staff members who wanted to grow in confidence at work and fulfill their potential.

  Portfolio life was a lot to juggle alongside my health issues. Plus, on top of it all, my part-time PhD was still there in the background, although at several points I had to ask the university for a break in my studies because I wasn’t able to manage it all.

  With the help of my doctors, I mastered the art of making each week work. For every working day, I needed a “crash out” day afterward to balance it. Socializing was minimal, as it took all my energy to earn enough money to survive. I was having to learn a whole new rhythm of life.

  The prime minister requests your company.” I read the email again, wondering if it was a joke. Probably just spam mail, I thought. But from the sender’s address, it looked like a genuine government email. It was for an LGBTQ+ Leaders and Influencers Reception, to be held at Downing Street, the prime minister’s residence.

  I RSVP’d, saying, “I’ve love to come,” hoping I hadn’t just replied to a spambot or an internet weirdo. On Twitter that morning, several of my LGBTQ+ friends were saying they’d been invited too, so I was relieved to discover it was real. I’d had some discouraging doctors’ appointments recently, where new supplements for fibromyalgia and ME had made no noticeable difference, and I was feeling low. So the email came at the perfect moment, a ray of sunshine.

  How amazing, I thought. I never would have dreamed, a few years ago when I was still in the closet, that I’d be considered an LGBTQ+ leader. There weren’t many gay women in the UK public eye. We were few and far between, so that seemed to have brought me to people’s attention.

  The day arrived, and I headed off to No. 10 Downing Street. Everyone smiled as we walked through the famous black door with the number 10 on it. We’d seen it so many times on the news; government officials often made speeches right in front of it. The reception was held out back in a spacious garden area. Looking around, I saw lots of familiar faces from corporate diversity events where I’d spoken or been on discussion panels.

  “Hello,” said someone, tapping a microphone. “Could you all gather over here, please?”

  There was a small stage at one end of the garden and we made our way toward it. A Parliamentary aide gave a welcome speech expressing gratitude for the work each of us did for LGBTQ+ equality in the UK.

  Next, the prime minister took the stage and gave an inspiring speech about how diversity makes the UK a better place for everyone. We clapped and cheered. Then, reading out a few people’s names, he thanked them individually for their special contribution to this cause. We smiled and nodded as each person’s hard work was recognized.

  Then, out of the blue, I heard my name. I thought I must be mistaken, but I wasn’t. People nearby looked my way and gave me a thumbs-up. I was amazed. I was getting a specific mention by the leader of our country for my contribution to LGBTQ+ equality in the church and the corporate world. It was humbling and healing all at once.

  When I saw Christopher for therapy each week, we chatted about how I was navigating my new portfolio career and how I was dealing with fibromyalgia and ME. Careful planning was enabling me to just about juggle both, although my capacity was far lower than that of most healthy people my age, and I had to restrict my social life to almost zero to have the energy I needed for work.

  I told him that I felt a strange mixture of weak and strong in this new chapter of life as an openly gay person. My journey had left a lot of scars: first scleroderma, with a literal scar down my forehead, and now fibromyalgia and ME, which seemed to be additional results of the stress that coming out had put on my body and my nervous system. All of these left me physically weakened and less able than I had previously been.

  In another sense, though, I felt stronger than I ever had before. My identity was out in the open, and I could be fully authentic at last. I felt more whole and empowered than at any other time in my life. I was happier than I had ever been, even with my health challenges, as I could be me. I could campaign for equality in the church. I could speak about LGBTQ+ rights and mental health in corporate environments. I could date and look for a female life partner.

  As Christopher and I chatted about this paradox, he asked me if I’d ever heard of kintsugi. I hadn’t. He told me it was a Japanese art form in which broken pottery was glued back together with precious metals like gold, silver, or platinum. “The piece looks weaker, because it has been fragmented and shattered,” he said, “but it’s also stronger than ever, as it is joined together with a valuable, powerful metal. It’s not going to crack again easily with gold and silver to bolster its strength. Plus, now it’s considered a valuable piece of art, and the places where it was broken have become its greatest beauty.”

  He pulled up a few pictures online,
and I looked at how stunning kintsugi was. The pieces were pricey too, as the gold and silver pushed the value of the pottery up and they became collectibles.

  “Maybe you’re a bit like kintsugi,” he said with a smile. “You’ve been fractured, but you’ve also been put back together. And your brokenness is now your strength and your beauty.”

  “Mmmm . . . I like that,” I said, smiling and thinking. “After a lifetime of feeling fragmented by fear and shame, coming out has made me ‘undivided.’ You’re right—it’s a lot like kintsugi.”

  From that day on, I displayed images of those beautiful Japanese art pieces on my laptop wallpaper and my smartphone screensaver. They reminded me, every time I felt weak, that actually my journey had also made me strong. I wasn’t the same person I used to be; someone more unique had emerged. My experiences had made me more valuable, not less, despite the fact that they’d left scars and damage in their wake.

  In our sessions, we also talked about my Christian faith. Although I’d gone through periods of feeling very angry, I didn’t blame God himself for the damage the church inflicted on me. I was able to separate his role from that of his people, which was the only reason my faith survived. My beliefs had been tested to the max, but I’d emerged with a deeper, richer spirituality rooted in mystery and wonder, a more honest faith that had room to breathe.

  God still seemed to speak to me through the simplest of things, and in hearing about kintsugi I sensed he was encouraging me again. I felt like he was at work in my life, healing the damage that had been done; his love and kindness were the “gold” and “silver” strengthening my formerly fractured pieces. In my weakness he made me strong—grace was literally holding me together.

  Around that time I met a wonderful Jewish rabbi when we were both asked to speak on a panel about faith and mental health. Both of us had dealt with depression, and we wanted to add our voices to breaking the taboo around this topic.