The emotional RA rollercoaster ride: battling hopelessness
I just got back from the hospital a few hours ago…37 YO and my SI joints having been hurting for what feels like years…I swear my 100 YO grandma appears in less pain than I do.
My depression is feeling deeper. Yep, still on disability from work. Saw a work friend for lunch a few weeks ago, the smiles and laughter felt better than any recent day I can remember,. Didn’t last long, as I’m sure many others have experienced, living with an “invisible” disability means other people get the right to judge you figuring out how to live life simultaneously - especially on the good days. Right? Wrong. Anyone else find that “need” to justify your disease, your pain, your choices EXHAUSTING? I feel like I’m battling hopelessness pretty badly at the moment. Test after test…meds after meds…new pain and new complaint…it never ends. How do I tell people what I need when I have no freaking clue?! I feel at the mercy of my body and I’m REALLY trying to listen to it.
I live in a city away from my family - just me and my 4 month old puppy. I’ve been undergoing Spravato (esketamine) treatments for nearly 4 weeks to help with the depression but still I’m finding it hard to get out of my current low bc I haven’t nailed down the right RA meds yet. And still everyone is asking “when are you going back to work?”
I DONT KNOW. I don’t know so many things. All I do know is I’m fighting like hell to feel better and I’m really tired.
If anyone else can relate - how do you shift this mindset? I’m really feeling alone in these feelings and the fatigue and exhaustion are doubling down.
Thank you xx
Hi
. Please know that people here understand. Sometimes with chronic conditions like RA the emotional aspects take a backseat to the physical, but they are very real and it is all intertwined. This article from our editorial team looks at these aspects, with some thoughts on managing: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress. We know this is easier said than done and it is important that you have taken steps to manage the depression. You may already be aware, but I want to mention that it takes four weeks for most to notice improvement with Spravato and that it is crucial to be patient (also easier said than done) because the timeline can differ for an individual.
Concerning the difficulty finding an effective treatment, many here have experienced the same problem. We know how frustrating the trial and error method of finding a treatment can be. I don't know if you have tried any of the anti-TNF drugs, but there is now a test, the PrismRA test, that can predict its effectiveness for an individual. I also want to share a quick story. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 45 years ago. Six years ago she started a new treatment that brought her inflammation numbers into the normal range for the first time. I Know another contributor,, has a very similar story. I know this doesn't help much in the here and now, but I tell you this to show that hope is real. Please know that you are not alone and that this community is here for you - you are always welcome anytime you need to communicate with those who understand. Best, Richard (Team Member) 
I truly hate that you're going through this. We do not talk enough about the mental struggle that RA brings on some people and how depression can bury us if we allow it to. Know first and foremost that it is completely okay not to have all the answers, especially when you're dealing with something as unpredictable as RA. Taking things one day at a time and focusing on small victories can sometimes help shift the mindset, so start there. The pressure to justify your experience to others is a heavy burden, especially when you're already battling so much. So if some people don't understand your pain, don't try to force them to get it. You can try to explain your pain and fatigue in relatable terms, such as comparing it to experiences they might understand. But even so, their lack of understanding doesn't minimize the impact RA has on your life. Continue to be patient with yourself and with others. Sending you positive thoughts, Latoya (Team Member)
