Move The Fuck Along

I’m going to implode if I don’t get this off my chest. I may drop a few f-bombs, so if that offends your senses, move along.

One of the worst things you can do to someone who has a chronic illness is question their illness when you know NOTHING about their disease. It infuriates me beyond belief and it just happened so this is raw and uncut. Let me drop some knowledge here.

First, when someone has a chronic illness, they’re always ‘sick’. The war that’s being waged inside of them NEVER ends. We learn how to hide and sometimes ignore our pain so that we appear to be ‘normal’. Sometimes we remove the mask around the people we love and trust, and sometimes we don’t.

Second, when you have a disease that requires you to take immunosuppressants, you’re going to get sick whenever your body feels like it. We have weakened immune systems, so of course we get sick all the time. Even if you aren’t on immunosuppressants, you’ll experience flares. Flares will exacerbate your symptoms and the severity and timeline are unknown.

Third, medications work and don’t work. We can’t control that. Some days the medication doesn’t work as well, and we feel like shit. Sometimes your medication gives you new symptoms that need to be addressed with another medication. Sometimes dosages need to be decreased or increased. Sometimes medications that have been helping, decide to stop working and now the quest for new medication begins.

Forth, being chronically ill causes a lot of stress, anxiety, and depression. Something else we have no control of. We’re in control of how we handle such things, but their presence is beyond our control.

Lastly, if you don’t know about someone’s disease, it’s extremely offensive and insulting to approach someone and question the legitimacy of their disease and symptoms. If you haven’t done the research and possess knowledge of someone’s disease, you need to back the fuck up.

I have a chronic and incurable disease that will eventually cause my death. That’s not drama, that’s corroborated facts. My immune system is shot so I get sick very easily and even a cold takes a few weeks to recover from. Some days, for whatever reason, I don’t feel well. it could be the side effects from medication, the weather, or stress. I have ZERO control of my MCTD. I can’t make it progress any less than it is or make there be no organ involvement. I CANNOT control my MCTD. What I can control, is how I deal with it. I take my medications as directed. I get lab work and any other testing my doctors feel is necessary. I go to every one of my doctors’ appointments. I’m constantly reading and researching any new information on MCTD that could help. I advocate [for] and educate myself. I fight this disease every day. I will fight it every day until the day I die. I will have good days and bad days, sick days and sad days, happy days and painful days. This is my reality.

If that’s hard too understand, then take a walk.

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