MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
So, I have shared with people my diagnosis of MCTD and I am surprised by some of the replies and reactions I have received. Some of them have been quite hurtful. Several of my friends were very concerned and were even reading about it to understand it. I am so grateful for them. My mother in law has been extra sensitive to how I am doing and that has been so kind of her. But....then I have my friend, who I would consider my best friend, and her response. I am not sure what to say. She is one of those people who wants a ton of sympathy from others if she is going through something but I am realizing she doesn't provide that if others are struggling. Is that toxic? She tells me over and over how she is sure she is going to get cancer because her mom has had cancer several times. I think..if she got cancer I would be there for her, be understanding and supportive. When I told her about my diagnosis and all the symptoms that could come with it her response was, "well you can't stop living your life. It's not like you're going to die or something." I don't even know how to handle this. I could easily see her not being understanding if I had to cancel on her due to a flare up and her being upset with me. Has anyone else had a similar situation? Thoughts?? Thank you!
I hope your friend will come around and be supportive the way you need.
Even it is hard, the worst is to jump into "self -pity" and stay there.
I always welcome advice from doctors who have compassion, or others with MCTD or chronic illnesses, or those rare people who seem to be born with an innate sense of exactly the right thing to do or say.
The thing is, at the start of this journey, we don't know how our friends are going to react and if they will be supportive. Some people I almost gave up on too soon-- after one, two, five, or ten years, they suddenly seemed to understand. Others just never seem to understand. My own personal gripe is people who recommend fad cures or meditation as if it's the quick fix for everything.
It's one thing if someone says, "You know, I had some luck with meditation when I was recovering from Lyme disease (or something similar)-- doesn't always work, but it takes the edge off. Sometimes I fell asleep or was too uncomfortable to do it, but over time, I think it helped." THAT kind of advice is useful, and very different from, "Have you tried meditation? I know a guy who could barely walk after a spinal cord injury and used to complain all the time, and now he's running a school for the blind in Indonesia and owns his own jet."
I don't know where the line is, I only know that it's clear when someone crosses it!
An able bodied healthy person will never understand the struggles.
You will encounter people who resent you for accepting and abiding by your new limitations. Whether it be coworkers, a boss, a friend or even family.
What works for me is understanding that before my symptoms overcame my daily life, I didn't understand either.
Having an illness is like seeing the world for what it really is. Especially once you become more susceptible to other people's energy (think about it, ever felt perfectly fine and suddenly felt awful? Pay attention to what changes, you'll be surprised how big of a difference it makes when you avoid negative energy).