How Do I Fully Explain What Having Ra Is Like To My Family Who Just Don't Get It?

Question

Asked by groverkitty

How Do I Fully Explain What Having Ra Is Like To My Family Who Just Don't Get It?

I've fully explained what RA is to my family. They just don't get it, or they don't believe me. For example: the day after I went to see the rheumy, my sis asked me how it went. I told her that I had a cort. injection into my pinky toe. She looked puzzled and asked me why. I said for my arthritis pain. She said, yeah, but why in your pinky? I told her because right now that is where it hurts the most. She just didn't understand and asked why it hurt there. I said because I have RA and that is where it hurts. I told her it feels like it's broken and she said, ouch...really?? Every time I talk to her about what I am going through it's like I have to start over. What do I do? Should I just forget it and not tell her anything? Also, her bf has MS pretty badly, and she acts like if it's not MS related it is meaningless. I try to be vague and not fully explain things every time, but then I get my feelings hurt because it seems like she just does not care.

Answer

I think there are a couple things going on with your sister. First, she's in a position where her boyfriend is hit very hard with MS and depending on how involved she is in his daily life - do they live together? - and with helping him through it, she already has her plate full with chronic illness and devastation in somebody she loves. She may not have the emotional room to listen closely. The second thing is that it sounds as if you're being so considerate of her stress that you are not being honest about what's going on in your life. Being vague, not fully explaining things guarantees that she (and other members of the family) won't understand, which again guarantees that you will be hurt and feel alone. When people are busy with their own lives or caught up in helping someone else with a chronic illness, it can make it hard for them to hear you, especially if you're careful about how you phrase things.

I'd recommend that you go out for a glass of wine or cup of coffee and dessert with your sister and talk. Tell her what RA is, refer her to this site, especially our section on the basis of RA for general education and then start talking about how it affects your life. About what it feels like to be in pain, how it makes you feel alone and isolated (I'm making an assumption here and am reading between the lines in your question). Check out my post about the Spoon Theory, which can help explain the impact of living with a chronic illness. The good thing is that since her boyfriend has MS, she's already halfway towards knowing what a chronic illness is like and since both MS and RA are autoimmune diseases, you and he probably have quite a bit in common. You can also be resource to her by referring her to our MS site, which can be a good community for both her boyfriend and her in terms of learning more about the disease and finding support.

I think the two of you have a real opportunity to bond - if you'll excuse the expression - in terms of chronic illness and how it can affect your life and if you lean on each other, can help each other talk to the rest of your family. However, it means you need to be honest and that you need to be patient - developing this bond between you in relation to this may take some time and you need to be prepared for her not being able to hear what you're saying at times.

keep us posted on the progress, please?