I have been asked many times by people why my RA is not like their RA. The simple answer is that no one’s RA is like anyone else’s RA!
But more specifically, RA is a secondary diagnosis for me. I was diagnosed with Mixed Connective Tissue Disease ten years ago. It’s only hindsight that makes me realise how brilliant my first rheumatologist truly was. MCTD is a rare disease, and it’s a combination of the signs and symptoms of many autoimmune diseases (commonly lupus, scleroderma, myositis, rheumatoid arthritis), without fitting neatly into a single diagnostic criteria. I didn’t understand any of that when I was diagnosed.
Not long after my MCTD diagnosis I DID meet the criteria for Rheumatoid Arthritis, and we focused on treating the RA symptoms, because joint pain and fatigue were the symptoms most affecting my life. But my overriding diagnosis has always been MCTD, and I have always had more going on, extra-articularly.
Reading through this article, it’s amazing how much of this is me. Joint pain/inflammatory arthritis resembling RA, Raynaud’s, muscle weakness, rashes, fevers, fatigue, hypertension, esophageal dysfunction, hair loss, lung involvement, breathing difficulties, pulmonary hypertension, heart involvement – pericarditis, myocarditis (inflamed heart muscle), mild kidney dysfunction, neurological involvement – trigeminal neuralgia, blood vessel narrowing in the brain, vascular headaches, tiny ischemic strokes and peripheral neuropathy….sound like anyone you know??? These are all diagnoses that have been thrown at me. It’s practically my medical history right there. Even the average age is 37. I was 36 at diagnosis.
And I am truly at the pointy end of the autoimmune cascade now. Too late to change anything, but if I’d known then what I know now, I would have done a lot of things differently. A lot.
And no, that’s not pointless thinking, these emotions need to be worked through. They are not to be swept away in a flurry of ‘think positive!’ or dismissed as wallowing. I have to sit with these emotions, feel them, and allow myself to feel sad. My feelings are valid. My feelings are real. Band-aiding over the top of them isn’t going to fix anything. Sweeping them under the carpet won’t fix anything. Pretending I don’t feel this way won’t fix anything.
I am allowed to be sad sometimes. It does not make me negative. It does not make me weak. It makes me strong and brave, to look all of this straight in the eye, accept it for what it is, and then ready myself for battle again.
And then…let it go. And return to making the best out of every moment. Enjoying the things I can do. And most of all treasuring the people who are truly there for me.