You're Doing RA Wrong: Dealing With Unsolicited Advice

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Living with rheumatoid arthritis (RA) is much like being perpetually pregnant: Someone will always have an opinion about how you are approaching life with this condition, and they won't hesitate to share it in great detail. We have all met individuals who tell us that our choices are wrong and will inevitably lead to terrible consequences. Learning how to live with RA includes learning how to live with unsolicited horror stories and advice.

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The urge to share

"If you can't say something nice, don't say nothin' at all." - Thumper's mother in the movie "Bambi"

When we meet someone facing a challenge, we like to share what we know. Often, this comes from a desire to help. Unfortunately, some people lose track of what is actually helpful or may lack the awareness to read the horrified expression on the face of the other person. Either way, being on the receiving end of a horror story or forceful advice is the very least we need when struggling with RA.

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The voice of doom

“I overheard a non-RA co-worker tell a co-worker with RA not to accept biologics from rheumy because they don't work; and cause cancer.” - @KateMae15

If you share that you have RA or take a particular drug for it, someone will almost always tell you that one or both will destroy your life, perhaps even end it. This advice may come from an experience with loss, which can make it hard for the person to include a balanced perspective about the true risk.

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Coping with a prophet of doom

“She got this really tragic sad face on and said: ‘Oh dear, I'm so sorry; you're in for such a hard road. Your family and friends won't understand, and your man will leave — they always do … poor dear, poor, poor dear ..." - Kathy

Some go doom-diving because they get a gleeful enjoyment from gossiping about tragedy. It can be hard to keep calm when you’re feeling vulnerable or worried. Role-playing with a friend or family member to practice a response can help you be prepared and stay calm in the face of gloomy remarks about your illness.

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The hidden agenda

A prophecy of doom can be paired with a recommendation to try a particular remedy or regimen, often not supported by research. Some people may come from an honest position of a positive personal experience or a wish to help, whereas others are less-than truthful and part of an unscrupulous sales pitch. Always check the research and consult your doctor. And remember the old adage: If it sounds too good to be true, it probably is.

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The minimizer

Almost all of us have heard a horror story about RA medication followed by a suggestion to treat our condition with over-the-counter painkillers or perhaps vitamins. For most, that won't address the condition. Unfortunately, there are a lot of misperceptions about RA, leading the general population to minimize its symptoms and effects. Finding the patience to educate people about the real nature of RA in such a situation can be a challenge, but ultimately worthwhile.

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The conspiracy theorist

"The person who said biologics were the government's way of altering our DNA to control us." - Stacey

Sometimes, conversations about RA and RA treatment can be like entering an "X-Files" episode. Some believe pharmaceutical companies are deliberately withholding a cure, others that doctors get kickbacks from handing out drugs. Too many people would have to be involved for these theories to stay secret. Try to remember, as Benjamin Franklin said: "Three can keep a secret, if two of them are dead."

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Health professionals with bad bedside manners

"I was hospitalized with an undiagnosed infection ... The doctor said if this turned out to be a fungus, then there was no cure and I should have my 'priest' give me last rites. This was in 2011." - Janine

There are many considerate health professionals, but some lack the emotional finesse and empathy to realize the impact of what they say. Unfortunately, medical schools don't spend a lot of time teaching bedside manner. Remember, as well, that doctors are human beings and therefore not perfect.

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What to do if your doctor scares you

“I’d had an X-ray to check my top neck joint. When giving me the results, my doctor said I was ‘a neurological accident waiting to happen.’ The follow-up a CT scan showed I was fine.” - Lene

Bringing a friend to appointments can be useful if you are too shocked to tell your doctor they are scaring you. You can also contact them later to share your reaction and ask for clarification. Most doctors will learn from this, becoming more considerate. As a last resort, consider getting a second opinion.

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Finding the truth

“Thank goodness I trust my team and my own research!” - Stacey

Each of us has to develop our own counterweight to the horror stories. It starts with finding a doctor you can trust to (gently) tell you the truth. In between seeing your doctor, do your own research on reputable health websites for balanced information. Such websites will have HONcode certification. As well, build your own network of sensible and supportive members of the online and real-life RA communities.

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Live your best life

"I try to ignore those stories; it's my life, my journey, and my story won't be one of horror. Truth? Yes. Pain? Some. Laughter? Always. If you can laugh at it, you can live through it." - Kathy

When you live with RA, find a way to emphasize the living part. One of the best ways to cope with horror stories is by knowing your own truth and having a strong sense of how you want to approach having a chronic illness. Building a strong foundation of fact, but also faith - in yourself, your doctors, your support network - will lend you the kind of strength against which no horror story can compete.