People judge us. You know this, right? They judge. It’s the first thing that happens if you choose to be honest about your illness.
Sometimes they judge you to be worthy…you ARE in pain. You ARE sick.
More often, they judge you to be unworthy. You are NOT in pain. You are NOT sick. You look fine. You are exaggerating. You are catastrophizing. You have a low pain tolerance. It’s all in your head. You are depressed. You just need to get out more. You need to try harder.
Once you’ve been at this game for a while, you get used to the people who don’t get it, and will never get it. You can accept these people as they are, because they may have many other wonderful qualities that add to your life. Or maybe they don’t, so you walk away from these people because they will never understand. Because you can’t change them. You can never convince them.
Sometimes the person doing the judging can be a doctor. And when it’s a doctor, it can hit you hard.
And the fact is, not all doctors are knowledgeable in the areas of rheumatology and inflammatory arthritis. These are not sexy illnesses. They don’t have good PR. They sound like old people’s problems, even though they are not.
How I wish Lady Gaga had come out saying she had ‘arthritis’ instead of ‘synovitis’.
The two terms aren’t exactly interchangeable, but synovitis is almost synonymous with inflammatory arthritis. Synovitis can also be caused by injury, and in Lady Gaga’s case, considering the physical nature of her performances, that’s probably exactly what it was. Although combined with her admissions a few months earlier that her blood tests are ‘borderline positive’ for Lupus, it does make me wonder if there isn’t a form of inflammatory arthritis lurking in there somewhere. Synovitis would also be symptomatic of lupus or rheumatoid arthritis.
Possibly, she doesn’t even know herself. There is no such thing as a ‘lupus blood test’, let alone being ‘borderline positive’. She probably had a low titre positive ANA. Which, in and of itself, doesn’t mean much. Combined with synovitis, however, some worrying signs are building.
What if she did have a form of inflammatory arthritis? Not that I would ever wish that diagnosis on anyone… but imagine.
It would have brought a whole lot of awareness to inflammatory arthritis. It’s NOT a sexy disease now, but Gaga is definitely sexy enough to change the disease’s image. She’s probably one of the only people that COULD pull it off.
But she didn’t have ‘arthritis’, autoimmune or otherwise. She had ‘synovitis’, and a labral tear. She had surgery. Now she’s all better. Certainly with her lifestyle and the physical intensity of her performances, that’s more than likely the case. And I really hope that all that is true and it truly was an injury and not an autoimmune disease flaring.
For two reasons: Firstly, as I said I truly wouldn’t wish inflammatory arthritis on anyone.
And secondly, if she does have persistent synovitis in several joints, then an opportunity to change how ‘arthritis’ is seen has been lost.
If she did have arthritis, and chose to advocate and educate, imagine what a role model she would be! We would all benefit from a much higher awareness level. And much greater levels of support. She could change the world for a lot of sufferers.
Someone as strong and vibrant and fit and young as Lady Gaga would be an amazing spokesperson. She is everything that people think arthritis is not. Sexy, young, fit, active, ambitious, workaholic and she looks fantastic.
Most people don’t know enough about inflammatory arthritis to put those details together and even suspect that it’s possible that Lady Gaga has a serious disease. Her Little Monsters are uninformed and unconcerned.
But I, and others who suffer from autoimmune diseases, can see the signs.
Imagine a world where symptoms of inflammatory arthritis were so well known, and understood that everyone immediately understood that Lady Gaga could be very ill?
Imagine if everyone knew that ‘synovitis’ means inflamed joints, and that a common cause of an inflamed synovium is autoimmune arthritis?
Imagine if they understood that Gaga might have Rheumatoid Arthritis or Lupus and actually know what that means? That these are incurable autoimmune diseases. That there are treatments, but not everyone responds well to the treatments currently available. That her career could be under threat. That she could be in severe pain in almost any joint in her body, that her disease could attack her organs, even her voice, and progress to leave her completely disabled. That she could be feeling fatigue far worse than she had ever felt, even after performing a 3-hour show.
Imagine a world where there was so much awareness and understanding of inflammatory arthritis that everyone knew this. Just imagine!