u/fittobsessed

Many of us know the cycle: try a new medication for 2–3 months, see if it helps, stop if it doesn’t, and start another one. We do this all while dealing with side effects, frequent lab work, and navigating the insane costs of many of our meds.

How do you manage this process?

What side effects have been dealbreakers for you?

Have you fought with insurance to get the treatment you needed?

Tell me the good, the bad, and the ugly with your meds.

This isn’t meant to be fear-mongering. Always consult your doctor for medical advice and before making any medication changes.

Navigating the healthcare system with UCTD can be very overwhelming. Finding good care can feel like its own full-time job.

Who’s been the most helpful on your care team? (Rheumatologist, PCP, neurologist, pain clinic, etc.)

What did they do that really made a difference for you? Was it good bedside manner, thorough testing, or just being the first to listen to you? Let’s share some positive experiences with our healthcare providers.

Yes, my symptoms are the worst they’ve ever been since being diagnosed and I’m constantly flaring, but I’m glad I’m “looking better”. I know people mean well when they say this and they’re hopeful you’re starting to feel better, but they just don’t understand invisible/chronic illness.

They don’t understand that I stopped losing weight, not because I’m feeling better, but because I’ve figured out the minimum amount of food I need to eat each day. They don’t understand that even though I’ve started 3 new meds, I have to wait weeks/months to see if they work AND they might not help at all. They don’t understand that I save ALL my spoons for that one activity they see me at and that I will be in bed as soon as I get home. Even if it’s 4pm.

Just needed to get this off my chest because it’s been a long day and I’ve been getting this comment a lot recently. It makes me want to scream.