But You Don’t Look Sick – Dealing Before Diagnosis

In 4 days, I’ll finally be seeing a rheumatologist. After 9 weeks of waiting, and 7 years of developing symptoms, of being fobbed off and ignored, I’m finally seeing a specialist. And I’m worried.

I’m worried because, for most of my adult life, I’ve been dismissed by doctors. Lose weight, stop smoking, it’s all in your head, you’re depressed… Diagnosed with Perthes Disease when I was 4 (at a perfectly healthy weight, a non-smoking toddler, and, although affected by my abusive home life, probably not depressed), I was treated at Great Ormond Street Hospital until I was 16, where I was discharged to my local hospital. Who then refused to treat me, as I was “making it up”. I’m amazed that such a young child had managed to fake X-rays and wrap esteemed doctors at GOSH around her little finger. Slow clap.

By 16, my femoral head had pieced itself back together, with some hairline fractures remaining. But what the consultant at my local hospital didn’t understand was that the joint was weak – the muscles, having had nothing solid to grow and strengthen around, were useless, and I needed treatment to build them up. I didn’t get that treatment until 2014, when I went private. The consultant was pleased with the progress of my femoral head, and explained that there was only slight dysplasia, which might go unnoticed by a doctor who didn’t know I’d had Perthes as a child. I was referred to physiotherapy, and spent a year working with a wonderful woman who a) helped me and b) listened to me.

It was my physiotherapist who first mentioned Fibromyalgia. I’d never heard of it, and immediately went online to research it. As she’d said during my session, where I’d complained of deep, sore pain, like a bruise, on my back, a lot of my symptoms matched. The pain, fatigue, headaches, sore muscles/joints, IBS, bruise easily, stiffness, even incredibly painful periods, which I’d suffered from since I started menstruating aged 10. A lot made sense. Then, I moved house in December, and pushed my body to the limit. My right ankle has been giving me trouble ever since, and often feels fractured. It gets very stiff whenever I sit down, emits a series of clicks, and is often too weak and painful to put any pressure on it. My boss has Rheumatoid Arthritis, and has been a source of knowledge during the last few weeks. I’ve pushed for certain blood tests to see if there are signs of inflammation (there are – CRP was 10 the first time, 17 the second. But my GP says that’s nothing to worry about.), and, in a strange twist of fate, I’m seeing the same rheumatologist she sees. Her high opinion if him gives me some hope, but I’m still worried that he, like other doctors, will dismiss my symptoms and simply tell me to lose weight. I’m sick of being fobbed off.

Through my reading around chronic illnesses and various blogs, I recently discovered Spoon Theory. In short, it basically means that people living with a chronic illness have a limited amount of energy, or spoons, and their starting number is usually less than people who don’t have such an illness. As you go through your day, you have to allocate your spoons, and if you overdo it, you may end up taking spoons from the next day, and barely functioning on a lesser amount. For example, I know that if I cook dinner on a work night, I won’t be able to have a full shower (i.e. wash my hair) that same evening. I simply won’t have the energy. I have to pick and choose what I do, always thinking ahead. It’s exhausting, and frustrating, as you have to learn to miss out, to slow down.

Spoon Theory by Christine Miserandino

Although the term ‘spoonie’ makes me cringe, Spoon Theory really does explain a lot for me. Last night, I sat in traffic for an hour on my way home from work, and my body is suffering for it today. My back, despite a heavy coating of ibuprofen gel, is aching and sore. My legs and hips are stiff, my ankles weak. I’ve had to wear Converse, which are tall enough to support my ankles, to work, so I can walk (well, hobble) around the office. Professionalism be damned.

Building up a network of people who understand has been incredibly helpful over the past 9, slow weeks. I’ve joined the Chronic Illness Bloggers, and downloaded the My RA Team & My Fibromyalgia Team apps on my phone. Before now, I’d been hesitant to blog about my illness, probably because I haven’t been given a formal diagnosis yet, but I’ve decided now, 4 days before The Appointment, to voice my concerns. Because if I’ve learned anything through my research and talking to others with chronic illnesses, it’s that each story is not unique.

Do you struggle with a chronic illness? Tell me your story in the comments below, or at thebandwagonreviews@gmail.com.

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