Hi everyone… I am 24 years of age and was recently diagnosed with lupus. Before getting sick, I lived a very fast lifestyle. I was working, going to school, and had TONS of friends. When I got sick, everyone slowly started to fade away. I felt like in the movie Coco, where the dead fades away when they are forgotten… the depression has been rough. I had to stop working because it was so hard on my body. I stopped going to school because it’s hard to focus. I lost all my friends. I feel like my world turned upside down. My mother has lupus as well, so I had a genetic predisposition. Life has really got me down. I pray this is just the beginning and it will eventually get better and manageable with time.
That ‘acceptance’ thing was something I had a HUGE battle with. I didn’t want to accept ‘this’. The reality is with any rare condition, it’s not like we have a choice. Me, I tried to fight against it. Tried to ignore it all and just get on with life. That was a bad idea. The more I pushed myself, the more my body pushed back. In the end I really had no choice but to accept it all and that was a very bitter reality to swallow.
Are you seeing a rheumatologist?
There’s also the | Lupus Foundation of America
They may know of specific specialists in your area. They may not of other treatments. They may also have access to (or knowledge of) community services that can assist. Those services are there to help, so use them for your own benefit. Having a network of supports is a really good idea, so you’ve got different people to call on if/when they might be needed.
You may not need too much assistance now, but if things decline it’s much better to have some idea of what services are available around you and how to access them. Some may need a simple enough pcp referral, but then some may need a specialist report.
That “Life has really got me down” is something we all have an understanding of. We know it because we’ve lived it and it is not easy, anybody who tells you otherwise has NEVER been here, so how would they know. If I sit and think about it all, it can really drive me bonkers. So, I try not to. I try to keep myself occupied doing something, anything. It doesn’t matter what, just so long as I’m not going over and over and ov… the same incessant thoughts.
Merl from the Modsupport Team
I totally relate to your experience of the initial adjustment to the new diagnosis. I was just about to turn 25 when I got mine (I’m now 34 and doing much better), and though I was sicker than ever and losing my ability to keep up with my previously very busy and full life, it was a welcome change to finally have a diagnosis so I could start getting treatment and getting better. I was very fortunate that I had very significant improvements from the combination of listening to my body and mind’s limits (just like you’re doing!), getting the right combination of meds, attending to only the very basics like good nutrition, lots of rest and self-care, and slowly building in the most supportive and sustainable forms of physical and social activities. It took about a year and a half of suffering through the worst period before I started getting my life back to moving again, but I found that I had accessed a resilience and built a more intentional approach to living that has been crucial as I continue to weather the long term milder challenges that still come and go. Wishing you the best as you take on this burden, and suggesting that if you see the self-care and recovery as your mission that is taking your full dedication right now, you may be able to feel like you’re still accomplishing great things. It’s very hard to be so isolated due to difficulty keeping up, but I can say that learning to live that way for a temporary period has given me a stronger sense of self-reliance and inner calm than I ever had before I got sick. I now have so much appreciation for the things I have been able to bring back into my life that I know I’m digging in and enjoying life and experiencing gratitude on a level most young people don’t know how to do as they go through stressful daily routines, distractions with short-lived pleasures, and constant battles with insecurity and FOMO. I hope you have just as much or even more success getting your life back to moving at an exciting pace, and remember to use the slowdown (or standstill) for nurturing those small inner workings of your being that get lost in the hustle and bustle of a busy and full life. Listening to your limits and getting the rest you need will reward you with allowing you to heal and get stronger again! You’re on the right track even though it really is a hard road.
A resource you might try if you’d like some support to positively frame and focus your self-care mission is a site called DailyOM. They are sort of a marketplace for very affordable sliding-scale online courses ($15 for the whole multi-week self-paced e-course) in yoga, meditation, and all kinds of emotional healing, personal growth and mental health topics, and have a really nice email newsletter that always seems to catch me with an impactful message that hits close to home in just the way I need. I wish I had found that sooner, because these days I tend to be too busy to take advantage of the courses I’ve downloaded! I had another big slowdown during the pandemic and tried to dig into them, but wasn’t as focused as I had hoped. But, they’re still there for me to pick up anytime I’m ready.