Members of the WebMD RA Community are mostly familiar with physical pain. But in this discussion, community members talk about the pain of feeling alone with RA, without support from family and friends. And when the physical and emotional pain exist side by side, the struggle can be difficult to bear.
The discussion starts with one person asking, "Has anyone else experienced a family that just refuses to accept your diagnosis?" As it turns out, she was not alone. Many other members have experienced disbelief and indifference about RA from those closest to them.
One woman said her fiancé broke off their engagement because of her "laziness." Another said that her ex-husband refuses to believe that their 11-year-old son has RA. When the boy is with him, his father doesn't do his son's physical therapy or make sure he takes his medicine.
Others feel constantly judged or doubted. One woman said her husband expects her to do all the housework even though she can't even lift the dinner plates to set the table. Her good friends understand, but her husband and adult children don't want to. "I fake it and smile and endure."
Unfortunately, other community members said they've also resorted to faking it, keeping their RA aches to themselves and putting on a happy face.
One member pointed out that well-meaning family and friends can be difficult to handle, too. People either feel sorry for her, or they are over-protective, she says. Or they lecture her on the latest "snake-oil" cures for RA. Sometimes their concern feels like just one more thing to deal with.
Other members in the community offered valuable advice for coping with your loved ones' responses to RA:
- Try to avoid people who aren't supportive and understanding, for whatever reason.
- Cultivate relationships with people who care about you and are empathetic, whether they are family or not.
- If you feel like you can't or don't want to do something, just don't do it. You don't need to explain why. Just tell people, "Sorry, I can't make it."
- Don't lie about why you aren't doing something. Juggling lies takes too much of your limited energy.
- Write to the person, explaining what it's like for you to have severe flaring in your joints. One woman said she tried this with her mother. Afterward, her mom admitted that she had not realized just how painful RA can be.
The bottom line, one community member said, is that you don't need family support to deal with RA. You need a good friend and confidant, and a good doctor that you can be honest with, and who you can trust to have your best interests at heart. "The rest is just noise," she says.