No. 4 - Don't Give Up
This is the fourth of ten things I’d like to go back and tell my newly diagnosed self about living with RA.
The bad news about RA is that right now there is no cure. There are people, more of them every day, that achieve remission, but your RA isn’t going completely away next week or next month or even next year.
It’s certainly not all bad news. After my diagnosis, I continued to have a really busy, productive, happy life. But along with normalcy and even the victories, there will be challenges. And along with the really good days, there will be days when you just want to give up. Been there. Done that. Got the tattoo.
There will be challenges
For me, not giving up has a lot to do with knowing there are going to be challenges.
There have been days when I couldn’t get out of bed. I’ve been through treatments that didn’t work. Even worse, I’ve been on treatments that worked great – for a while – then quit working. There will be people, even people close to you, that don’t have a clue of how you’re feeling or perhaps think you’re faking. The point is, knowing those things are lurking out there makes it easier to deal with when they make an appearance in your life.
Exerting control over the RA challenges
When these things happen, and you’re feeling your most vulnerable, it’s easy to forget we can exert some control over many of these challenges.
- If a treatment isn’t working, perhaps it’s time to augment or change it. Adding or changing a DMARD used with a biologic can often help. Changing the type of biologic you’re using might be helpful. Things like exercise, massage, and diet can make a positive difference.
- If you’re overwhelmed with fatigue, perhaps you can get clearance to work from home or pick up dinner for the kids on the way home instead of cooking.
- Don’t forget to enlist help. Your healthcare team can support you through treatment options and therapy. Perhaps it’s time to have a family meeting about redistributing some of the household chores or hiring some cleaning help if you can afford it.
- Connect with community. Sharing your story or asking advice from someone who’s had a similar situation is incredibly helpful. Knowing that you’re not facing this terrible disease alone makes a world of difference.
Being honest and realistic about your limitations
Remember, being honest about your limitations isn’t the same as giving up.
Sometimes you really do need to just stay in bed. Rest is a critical part of managing the disease. And even if you can’t go to the party and dance, you can still go and listen to the music. One of the weirdest parts about RA is that the next day you very well may feel like both going to work and going out dancing.
Honestly, and if you’ve read some of the wonderful stories here on RheumatoidArthritis.net you know this is true, sometimes it’s just sheer determination. As I have said to myself on more than one occasion, “Sometimes the only way through a situation is through it.”
I occasionally am asked to talk about the good things that have come out of having RA. After I pick myself off the floor from laughing so hard, I’ve been hard pressed to name anything. But RA does open wells of resolve and fortitude that you never knew you had. And when that happens, use that new-found power to keep going and not give up. There may not yet be a cure, but there is always tomorrow and there is always hope.
How often you do experience an unexpected boost of energy?