Coping with a Lack of Understanding
Rheumatoid arthritis (RA) is a hidden disease. There are no rashes covering your entire body like the measles. There are no swollen areas that take shape like the mumps. Treatments have no profound, immediate impact like baldness from chemotherapy. There is no way for someone walking by on the street to know that you have this chronic medical condition.
In some ways, this is a benefit. In other ways, though, people not being able to see the impact of RA may create confusion, frustration and preconceived notions to run wild.
People in your life may have a hard time believing what they cannot see. They may doubt your diagnosis or the level of symptoms that you experience. This lack of understanding rheumatoid arthritis may start small, but over time, it can build to become a major barrier to having highly successful relationships.
Communicate for Control
Since RA is a hidden disease, you have complete control over all information related to your diagnosis. You get to decide who knows about it and who does not. You can choose to give them the complete picture or only the most necessary pieces of information. In this respect, you hold the power.
Using assertive communication in your conversations with others helps to ensure that your message is received in the best possible way.
Use Good Nonverbals
Before you can think about what you are going to say, think about how you are going to say it. Your nonverbals are made up of your movements, posture, eye contact and facial expressions. The rate, volume and tone of your speech are also part of your nonverbals.
Regardless of what you say, the conversation may be undone by poor nonverbals. Avoid slouching, looking at the ground, yelling or whispering, making extraneous hand movements and speaking too quickly.
To discover positive nonverbals, think about people that are natural public speakers. Study the mannerisms and methods they use to lure in people around them. Practicing in a mirror or with friends will help the process.
Another facet of communication that can derail a conversation before it leaves the station is poor listening. If you are too consumed thinking about your next response or the best way to “win” the exchange, success is impossible.
Slow down your mind and your responses to encourage better listening. Repeat and rephrase information given to you to ensure correct understanding. This is another situation where eye contact is helpful as it aids in your ability to listen.
Set a Goal
What do you want to accomplish with this discussion? How do you want the other person to respond? Goal setting places something on the horizon for you to aim towards. You may not hit your target, but a miss is much better than not having a target at all.
The best goals are specific and achievable. If you set a goal that is too far from your reach, you will be disappointed by your inability to accomplish it. Set small goals that all build towards an ultimate desire.
Communicate for Control
Know Your Audience
This is another situation where how you say something is as important as what you say. To have successful communication, you need to craft the style for the particular person. Your best friend, grandmother, niece and coworker all require the information presented in a uniquely individual way.
This also helps to keep your communication fresh as repeating the same information in the same way to numerous audiences will make the process stale.
You do not need the ideal time, day or setting to have a conversation with someone in your life. You only need a place that is quiet and free from distractions.
Be sure to give the level of attention to them that you would like to receive. It may be easier to discuss important matters during a commercial, but it is probably not for the best. Shortcuts always lead to poor results.
When done correctly, I statements, or I messages, allow you to give someone information in a clear, specific and direct way. This enables you to ask for some type of change while maintaining a sense of respect for them as well as for you.
Saying, “You need to change,” or “You’ll never understand what I’m going through,” will only cause the recipient of this information to take a defensive stance. Then, they are more likely to lash back against you and a conflict has arisen.
Avoiding a defensive state is huge because you may spend the rest of the conversation calming the other person down.
Know Your Stuff
Now that you know how to get your message across, you can refocus on what you want to say. RA is a big issue to address, and even if you have been diligent about attending appointments and following doctors’ orders, you may not know much about RA or how it affects you.
Building your knowledge base makes whatever you say more convincing.
When you had to do a presentation in school, the first step was gathering research. The same is true in this instance. Talk to people who have already been through or are going through RA. What have they experienced? What are they going through now? Understand their symptoms and familiarity with the condition.
Online support groups are a perfect source of this information. Discuss symptoms with your doctor to have an idea of what is clinically expected. Ask about and search for reliable written information. This will provide you some level of expertise on the subject. This expertise will carry weight in your conversations.
Though there are themes and common groups of symptoms for people with RA, your individual experience will differ. Pay attention to yourself. Gain a familiarity regarding when your symptoms strike and what your triggers include. How are you feeling physically? How are you feeling mentally?
Do not discount the powerful impact of a physical condition on your mental health. Any kind of pain and fatigue are associated with increased depression and anxiety symptoms. Knowing what helps to reduce the symptoms is valuable as well. Experiment with different remedies to find success.
Starting the Conversation
Starting the conversation is the hardest part since you allow your worry to second guess your intention. Because of this, review these sample conversation starters based on different goals. Are you ready to take the first step?
Goal: To let someone know that you have RA.
Method: I wanted to let you know that I was diagnosed with a disease called rheumatoid arthritis. People call it RA for short. It is not contagious and you cannot see it, but it causes pain in my bones and makes me feel tired. My doctor is putting me on medication and I hope it helps. I’m telling you because you are important to me, and you deserve to know. I really hope to have your support and patience. Please let me know if you have any questions and we can discuss them whenever you want.
Goal: To tell someone that you are frustrated by their lack of understanding regarding your RA.
Method: I feel disappointed and frustrated when you don’t acknowledge the impact RA has on my life. I would appreciate more compassion and understanding from you. You can do this by being more patient with me when my symptoms are high.
Goal: To tell someone that you can no longer interact with them because of this lack of understanding.
Method: I feel sad when you ignore my RA symptoms and blame me for my symptom flares. Because of this, I can no longer have a relationship with you. I need to surround myself with positive people and you have not been an asset over recent months. If you are interested in gaining more understanding and empathy in the future, I would be happy to restart our relationship.
These are just a few examples, but hopefully, the themes are consistent. You begin with how you are feeling, why you are feeling that way and what you would like the other person to do.
At times, you may only want them to listen or to give you more space. This is only the beginning, but the way you start something is a predictor of how you will finish.
RA, like other chronic medical conditions, will negatively impact your life in tremendous ways if you let it. One of the reasons why positive communication is so crucial is that it keeps you connected to your supports and reduces other stressors.
If you stay assertive, know your subject and start the conversation, you can live happily ever after.