What Would Your Current Self Say to Your Newly Diagnosed Self?
When someone first learns about a new diagnosis, it’s easy to feel overwhelmed. Discouraged. As if you’re starting all over in learning how to live.
In a way, yes, you are starting from scratch as you build a life that works for this new you that has RA. You learn how to implement kindness, an understanding for your own body and how best to take care of yourself.
Back in June, we asked on the RheumatoidArthritis.net Facebook page: “What would your current self say to your newly diagnosed self?” More than 100 of you commented, sharing your tips on exercise, doctors, medicine and overall coping strategies. Here’s what you had to say.
“You are your best advocate … and don’t be hard on yourself. You did nothing to get this!”
As with many diagnoses, RA affects everyone differently, with different symptoms and severity at different times. Those of you living with RA have learned how to listen to yourselves to give yourself what you need in any given moment. Moreover, several of you reminded yourselves that this diagnosis is not a result of something you did, so stop beating yourself up. Try to find compassion instead.
“You are your best advocate. You have to do this. You have no choice. But, how you do it is up to you. Find what helps you. Find the doctors, medications, physical therapy and other things that aid you. Find a friend. Educate yourself and your family. Most of all: Don’t be hard on yourself. You did nothing to get this!”
“Don’t care about what everyone else thinks you should do. Take the meds. Rest everywhere you can. Ask for and accept ANY and EVERY bit of help offered. It won’t always be this bad. And it’s not your fault!”
“Find a doctor you trust who will listen to you.”
Yes, the doctor visits may be frequent. Quite a few of you stressed the importance of taking your time finding the right healthcare specialist to confide in, and whose course of treatment is most in line with your values. And, if you see a doctor who is not a great fit, don’t be afraid to break ties and see someone else.
“Do lots of research when choosing a doctor. You are going to be spending a lot of time with this important person.”
“Find a doctor you trust who will listen to you. Be aggressive in your treatment. Refuse to allow the disease to bring you down. Handle it, but respect your limits.”
“Make your own choices when it comes to medications.”
A lot of you mentioned medications as a necessary-for-you course of treatment. You also mentioned doing ample research about the side effects, so you won’t be surprised later on by what might occur as a result of these medicines. Side effects aside, most of you cited that you do find comfort and strength in medicine and suggested taking your time in finding the right prescriptions and right doses, then being diligent about taking the pills as needed.
“Make your own choices when it comes to which medications you should take. Don’t let anyone tell you not to take them because of the side effects.”
“Don’t be so afraid of the meds.”
“Take the anti-anxiety pills!”
“Everyone says, ‘You don’t look sick.’”
It’s hard enough to not feel well, and then on top of that, to hear others weigh in on what they think is going on with you. What other people say about your diagnosis is more about them than about you. If you can, try not to let their negative words have an impact. Remember, they are not living in your body and cannot feel what you feel. They don’t understand what you’re dealing with, and that’s OK. If you have such an encounter with someone who doesn’t understand, one good trick is to immediately afterward, call someone who does get it. Connection and understanding go a long way in being able to cope along the journey.
“Mentally prepare yourself for the people who think autoimmune diseases are just figments of one’s imagination, and that all who are diagnosed with them are hypochondriacs. Neither of those things fit you!”
“Everyone says, ‘You don’t look sick.” I have learned how to cope without expecting other to fully understand what I am going through.”
“Train yourself in new ways of staying fit.”
Exercise is key not only to give your body some movement, but also in relieving stress. Exercise is medicine for us mentally and emotionally, not just physically. Several of you named swimming as a good choice because it is easy on the joints. Sometimes even just showing up to a place where you intend to exercise, be it the gym or pool, is great even if you merely stretch or do some of a workout. Every bit helps!
“Listen to your body and rest—you are not just being a baby! Train yourself in new ways of staying fit, such as water aerobics, yoga or biking. You know your body better than anyone!”
“Get a personal trainer who understands RA, and then work with that trainer from here on. Make your body as strong as it can be. I am not in horrible shape, but I wish I had been more diligent earlier about physical fitness.”
“You are going to be fine.”
Biggest of all, a lot of you offered reassurance that life will be OK. Many of you said you wished you had been given reassurance early on when first facing the pain of the disease, coupled with the struggle of accepting the diagnosis. None of this is easy, but some of you who have lived with the diagnosis for a while have found a peace with it all. You’ve learned that there are good days, and that there is still so much to enjoy. Most of all, you have learned how to appreciate the good days so much more when they happen.
“You are going to be fine, but you will have to learn how to live a totally different life. Developing RA changed my life in so many ways, but honestly, in some ways for the better. It has taught me to appreciate every “GOOD” day that I have. People who have no sickness in their body do not understand how grateful they should be to feel good every day.”
“Don’t panic, it’ll be OK. Rest more—you will need it.”
“Rest when you hurt. Work all you can. Learn to live with some of the pain.”
“It’s going to be OK. Take good care of yourself, love yourself on good days and bad, and live life every single day!”
“This is a complicated disease … it will take time to hopefully get it under control, so be patient. It’s OK to have a down day and not get anything accomplished. Change is inevitable.”
“It is not the end of the world. Take it one day at a time!”
A huge thank you to everyone who offered suggestions!