SUPPORT FOR FAMILY AND FRIENDS

Supporting someone with sarcoidosis can bring about its own set of challenges. If you find yourself in this position it may be helpful to speak to others that know what you’re going through. SarcoidosisUK has a Facebook support group designed specifically for family and friends – you can join here.

Why do you think it’s important to raise awareness for invisible diseases? How do you do this in your own work?

Years before my mum was diagnosed with sarcoidosis, she was misdiagnosed with cancer of the thyroid based on a tumour in her throat. Removing that tumour meant removing most of her thyroid, so I grew up with an invisibly ill single parent who relied on Levothyroxine to stay alive. At the same time, she was coping with undiagnosed sarcoidosis, and doctors waved away her symptoms as medical side effects.

I believe they dismissed my mum because she is a classic overachiever, a storm of determination and gritted teeth who doesn’t conform to ableist perceptions of what it means to be unwell. People use her capabilities and achievements to diminish her health issues—as if she can’t really be sick because she is so brilliant. I grew up in awe of her drive and ingenuity, but I also grew up watching others ignore the fullness of who she really is. Because her disease is invisible, people assume she is well and judge her when she seems otherwise—or they learn that she’s sick and decide it’s a lie.

When I later developed invisible illnesses of my own, I got to experience this treatment first-hand instead of observing it. Lucky me. (Actually, yeah, lucky me—because I had Mum as an example to guide me through.)

Those experiences taught me that half of the struggle for invisibly ill people is the ignorance of those around us. Even genuine attempts at empathy fail without basic education, because you cannot put yourself in someone else’s shoes if you don’t know what the shoes look like or how to lace them up. The ignorance of the average healthy person is systemic; society doesn’t care about sick people, so the individuals within our society are never taught to spare us even a passing thought. I, for example, had never heard of anything like my mother’s condition, or even my own condition, before our symptoms forced us to learn the hard way.

Raising awareness of invisible illnesses through my romance novels is the only tool I have to combat that issue. When I include invisible diseases and disabilities in my books, I hope it teaches healthy readers that this stuff is real, and common, and it matters. In my Ravenswood series, two of the heroes have their lives and family dynamics altered when their mother is misdiagnosed with cancer, then diagnosed with sarcoidosis. (Autobiographical? Me? Why, I would never be so lazy a writer. Or would I?) In my bestselling romcom Get a Life, Chloe Brown, the heroine’s fibromyalgia is a constant part of the story—not as the point of the book, but as a reality she copes with while achieving her goals and falling in love. 

To put it simply, I aim to raise awareness of invisible illnesses in my work by telling our stories, stories that are usually shunted out of the spotlight because they’re not neat or pretty or aspirational enough. But I believe, and I think my readers agree, that being neat and pretty and aspirational is nowhere near as interesting as being real.

What has been your personal experience with sarcoidosis?

My only experience of sarcoidosis is watching my mum go through it. That limited perspective is all I can offer. To me, her sarcoidosis journey is overwhelmingly characterised by dismissal and abandonment. One of my earliest memories is my mother having the tumour in her throat removed, and being told that everything was fine now, and she was fixed, and her other symptoms were some sort of hysteria. I grew up disliking doctors because instead of making my mum feel better, they made her sad. She’d go to an appointment filled with hope that this time, she would be listened to—but she’d leave dejected and doubting herself.

Then came her second misdiagnosis of cancer. When my mum, a super-fit sports lecturer, complained of breathing difficulties when taking the stairs, she was finally listened to and her lungs were scanned. Several tumours were found. Instead of reviewing her history, asking about other symptoms, checking the records of the countless appointments she’d made to describe her joint pain, exhaustion, and dizziness, a consultant immediately diagnosed her with terminal lung cancer.

Terminal. Lung. Cancer.

I cannot describe how my mother felt at that point. It is impossible. I can only speak—barely, incoherently—for myself. At that point, I was a teenager at university. My little sister was five. And that night, after everyone else had gone to bed, I sat down at my laptop and researched how I might gain custody of my sister after our mother passed. I searched for jobs I could secure without finishing my degree. I Googled ‘How to rent a flat with no credit’. Only to later discover that my mother’s diagnosis was incorrect and negligent.

Soon after that incandescent relief came a new reality: Mum had pulmonary sarcoidosis, and the tumours might go away on their own. Or they might develop anywhere in her body, including her brain, causing untold havoc and danger without warning. It seemed so cruel, after years of watching my mother be sick and uncertain about it, for her to receive a diagnosis that amounted to: “You will always be sick and uncertain about it.” I was furious. I was absolutely, pointlessly, furious.

But Mum was unusually optimistic. (Probably because of the whole It’s not terminal cancer! thing). “I’m still here,” she said. “If this thing wants me, it can drag me kicking and screaming.”

In the years following her diagnosis, she’s proven how much she meant that. Mum’s illness is a constant rollercoaster, unpredictable and impossible to halt. She is exhausted, she is in pain, and some days she is hopeless. But again and again, she does her level best to keep going. To bend instead of breaking. To adapt. When her symptoms made a traditional workday almost impossible, she developed a plan to get her private tutoring company off the ground and quit her almost twenty year career as a teacher. And when she learned that many sarcoidosis sufferers struggle to maintain their fitness, she used her personal training qualifications to start a sarcoidosis-friendly workout group.

In short, my personal experience of sarcoidosis has been half frustrated rage, and half hope. That hope is all my mother. No matter how many times her illness forces her to pause or change track, she is determined that it will not force her to stop.

What advice would you give to people who don’t quite know how to support their loved ones through their sarcoidosis journey?

I think supporting someone you love is a very individual experience. It’s tempting, when someone’s struggling with an issue that affects many, to treat them as just that—one of many. But they’re still themselves. My mum, for example, has never had time for talk without action, so Googling ‘what to say to sarcoidosis sufferers’ wouldn’t help me support her. It’s action she wants, and that fact hasn’t been changed by her illness.

So that’s my first tip: don’t lose sight of who your loved one is and always has been. Don’t let your (valid!) worries about their sarcoidosis swallow up your perception of who they are.

My second tip would be—like I mentioned before—educating yourself so your empathy can be effective. You need to have some understanding of what your loved one is going through, and I guarantee they don’t have the energy to tell you. For some sarcoidosis sufferers, that would mean expressing a never-ending litany of pain and panic and alarming organ malfunctions—which wouldn’t be a fun or effective use of their time. Far better for you to learn how sarcoidosis works, how it can manifest, and what can help. Then, when they’re struggling, instead of asking for more information, you can say, “Is it XYZ problem? Might this solution help a bit?” That way, the two of you can learn how to deal with things together, rather than all the responsibility being on them.

My final tip is simply to listen. To really absorb anything they share with you. To take them seriously, because they’re trapped in a world that generally doesn’t. Try your best to be a safe harbour. Sometimes that might be all they want from you.