The Worries and Anxiety That Came With My Lupus Diagnosis

When I was first diagnosed with systemic lupus erythamatosus (lupus or SLE) I was massively relieved and happy that finally I was getting some answers. But after the euphoria settled, it all suddenly got very real.

It sunk in that I had an incurable, potentially life-threatening disease which could come back at any time and attack any part of me it felt like, without warning. Brain, lungs, kidneys, skin, joints – nothing is off limits to lupus.

I’d been told about the diagnosis by letter, and although I knew that Googling it was a bad idea, I challenge you to try resisting that one when you’re going to have to wait two weeks to see a doctor who can explain it. And the internet told me that “many patients live at least five years.” Awesome.

(The doctor later explained that many patients live to old age, just that the organization in question had only tracked patients for five years. Lesson learned!)

The doctor started me on a cocktail of drugs and tests, monitoring me closely, and very slowly, my symptoms started to improve.

It’s easy, and maybe normal, to be incredibly practical about dealing with your illness at a time like that. You take one day at a time. I remember going for an MRI scan of my brain stem because they were concerned the lupus may be causing damage there. It didn’t seem like a particularly big deal at the time – just another appointment. It’s only looking back and talking about it now that I realize quite how scary it all was.

I guess it’s also normal to question why this has to happen to you, and to be angry that it is happening to you. Throughout my 20s, while I was ill and finally getting diagnosed, my friends were out having fun, socializing and then settling down to start the rest of their lives with a solid footing – or that’s how it felt to me. Instead, I was struggling to get through the days in pain, tiredness, and growing anxiety, missing out on a lot of the fun because I just needed to sleep.

While they were planning parties and weddings, I was learning about treatment options, getting used to weekly blood tests and trying to stifle side effects of medications.

They were also a wonderful support and I couldn’t have got through this without them. I just wish I could have joined in more.

Lupus, like many long-term conditions, is a waiting game. It can get better, and then flare again for no reason. The uncertainty of not knowing when or where your own body might strike against you next has been one of the hardest parts to get my head around. It’s been years and I still don’t have that worry completely under control.

Anxiety has certainly been one of the biggest legacies of this whole experience. I did have an excellent general practitioner (GP) at that time, who told me he wanted me in for a chat early after my diagnosis, just to check how I was doing. It told me the surgery was interested, that they understood that I had a lot to get my head around and that it was OK to ask the “silly questions.” I wish my GPs since then had been as good, after I moved away from the area after my diagnosis to be closer to my family.

For all that the GP could do, I’d love for there to be more structured support to help patients come to terms with their diagnosis, as part of the diagnosis and treatment plan. In my experience, the hospital based staff were (mostly) kind, sympathetic and concerned. But it ended there. I wasn’t given any information about emotional support to help me adjust to the changes in my life they were telling me about. Learning you have a condition like lupus has a huge emotional impact and the process of coming to terms with a change like this to your life needs to be better catered for by the hospital teams delivering the diagnosis. There’s a long way to go.

Follow this journey at Megan Rose Freelance Writer.

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