I grew up in a house where you didn’t visit the doctor unless it was a mandatory school examination, or you had obviously broken a bone. I continued to live by this philosophy as an adult, so, when at age 36I started waking up at night with fingers I couldn’t bend for any obvious reason, I surprised myself and my primary care physician by quickly seeking medical attention.
My physician knew me well enough to know I am not one to ask for help unless I really need it. His willingness to listen to me made all the difference in the world — right away he referred me to a rheumatologist.
I was lucky. My diagnosis and treatment plan started quickly. But this isn’t true for everyone.
Initially, I tested seronegative for RA as many in the RA population do during the early years. During my first visits, X-rays didn’t show any damage. However, my rheumatologist listened to my growing symptoms and ordered additional tests that led him to making a fairly quick diagnosis.
Again, I was lucky to have the doctors I did in the beginning but not everyone experiences this same good fortune. Instead, many folks have doctors who won’t listen or even worse, imply their symptoms are all in their head.
A doctor may also hesitate to make a diagnosis due to symptoms that come and go. In fact, even patients may wonder if such a strong diagnosis is necessary because initially, symptoms may be subtle enough that one may think it is part of the aging process. Even at 36, I wanted to laugh my pain off as a result of “getting older.” Plus, early on, symptoms may come and go making you unsure as to whether there is a real problem. Additionally, as complaints are being made, a primary care physician may not know enough about RA to pick up on the seriousness of what is happening to your body.
As you can see, getting a diagnosis for RA is not easy. It often takes several visits, lots of testing, and doctors who understand the symptoms you are experiencing. With so many steps to getting a diagnosis, you may ask: “What can be done to make sure I am seen, heard, and treated?”
Four tips for getting treated
As soon as possible, begin documenting your symptoms daily. There are many apps available to track your symptoms, but paper and pencil work just fine, too. Why is this so important? If you aren’t experiencing the symptoms at the time of your appointment, you might forget the details. Also, take photos of anything out of the ordinary, such as swollen joints or redness surrounding joints.
While we don’t want to self-diagnose, knowledge is power. Understanding the symptoms you aren’t experiencing can be just as helpful in making a diagnosis and getting treatment as knowing ones that you are feeling. Perhaps you look at the symptoms of lupus and realize you don’t quite fit into that category but align better with the symptoms of RA. This could be helpful information for your doctor.
3. Advocate for yourself
Learning to become your own advocate is one of the nicest things you can do for yourself. Learn to speak up when you feel you aren’t getting the treatment your body deserves.
- Educate yourself on treatment plans and share the options with your physician.
- Be explicit in your wants and needs.
- Take a friend along who can take notes and ask the questions you may forget once you are in the office.
4. If your doctor isn’t working well with you, move on!
At a certain point we have to realize that it is time to move on. Our bodies deserve to be treated quickly and efficiently. If that isn’t happening, it is time to start doctor shopping. Sometimes it takes a second, third, possibly even a fourth doctor before you start getting answers. It is exhausting, I know, but your body needs it. Don’t give up.
While we may each differ in our original symptoms, one thing we know that is true for everyone with RA is that the sooner you begin treatment, the better. So, please don’t give up on getting a diagnosis.
See more helpful articles:
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What are the Early Signs of Rheumatoid Arthritis?
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