A Few Choice Words For The Nonbelievers…

I think we’ve all been there. Someone in our life doubts us. Maybe it’s us. Maybe we doubt our own diagnosis and think our symptoms are “all in our head”.

It’s easy to do, believe me. I still wonder if this is real because after a lifetime of being sick and having few people believe me (including doctors!) and the tests coming back “normal” it’s still so surreal to have a name for what’s wrong with me (and an actual medical code to bill the insurance with)!

On top of that, in the midst of a bad flare I often forget why I’m sick and have no clue how to help myself, which easily can happen to us because of how mast cell degranulation affects our brains. From The Mastocytosis Society:

When the symptoms occur, it is common for patients to have difficulty thinking clearly, which restricts their ability to help themselves. Mast cells are in every organ including the brain. When symptoms occur, many patients experience problems speaking or articulating their needs, or even understanding what exactly is happening to them and what they need to do about it.

So we can be forgiven for doubting ourselves. We have an excuse. But what about the other (forgive me here) assholes in our life that have no reason to doubt us, yet still do?

It breaks my heart when I read fellow patients tell stories of being dismissed, doubted and outright called liars and fakers. Not only is it hard to accept that someone in your life doesn’t believe you – perhaps someone you care deeply for – but it can be extremely triggering for us. That can make us worse and cause our health to decline even further.

Again, from The Mastocytosis Society:

..it is vitally important for patients to avoid triggering mast cell degranulation to both lessen their suffering, and preserve their quality and length of life.

These doubters and naysayers literally become toxic to us, and the anxiety they create can be detrimental, so how do we handle them?

The same way we handle any toxic people in our lives. Here are some great tips from Psychology Today:

Your Psychological HazMat Suit

The surest way to shield yourself from toxic behavior is to severely limit or cut off entirely contact with people who regularly spew it. But that is hardly ever possible or practical. Better to arm yourself with a few basic skills. They all fall squarely in the zone of self-management.

Control your exposure.

The single most important thing you can do is minimize contact. If you work near a toxic person, ask for a rearrangement of desks. Never sit next to a toxic person: It’s catching, says Dylan Minor of the Kellogg School of Management.

If you work on a team with a toxic person, ask for reassignment to another project. If that’s not possible, ask your boss to consider having the toxic teammate work more often from home, or to at least require fewer group meetings.

If your boss is the toxic person, limit the time you spend with him or her and identify others in your organization who can offer an ear. If nothing at all can be done, start looking for another job. If that’s not an option, request to be paired with a different supervisor.

If you have hiring power, learn how to question candidates for signs of emotional competence and lay out norms for behavior at the beginning, says Georgetown’s Christine Porath.

If the toxic person is your spouse, or an ex-spouse with whom you share children, you likely need the help of a mental health professional for navigating the relationship, says psychologist Rhonda Freeman.

Manage your reactivity.

Here’s where you have the most leverage. Most essentially, says Yale’s Robin Stern, set firm boundaries. Assertively say no to demands that feel unreasonable—without justifying yourself. Have on hand a few good mantras for the moment a toxic individual blames or bullies you: “I’m not going to continue this conversation if you’re calling me names,” or “I’m happy to discuss this with you when you’re calm.”

Maintain clarity about toxic encounters by taking notes about how you felt before, during, and after any such interaction, as well as what was said and done by all, Stern advises. Doing so can help you make a case for managerial intervention.

Strengthen ties with friends and others you trust. Especially if the toxic person is a spouse, relationships with people who treat you with respect can buffer you from stress and help balance your perspective. Having your point of view validated can also boost your self-esteem and counteract isolation.

Find activities that take you away from the toxic person or environment. Join a book club,  take a cooking class. You’ll also gain a better a sense of who you are in relation to the world.

Don’t explain.

Avoid even trying to explain yourself; by definition a toxic person is one who refuses to hear your perspective. Attempts will only frustrate you. Say “I’m sorry but I’m busy then,” or “I can’t do that right now.”

Offer no explanation, no matter how much ranting and raving the other does.

Immunize yourself.

Spot those with toxic potential and avoid them before there are any outbursts. Recognize the personality traits that feed toxicity. The drama queens. Those who are suspicious or notably aggressive. And those who consistently display little regard for the feelings of others.

From personal experience I have learned that the best thing to do with some toxic people is to cut them out of your life completely, if at all possible. Others have to be kept at a far distance. Some we just have to immunize ourselves against so we can be near them either out of choice or necessity.

Putting ourselves out there to be abused isn’t an option, no matter what, though. Our health – our life – depends on it.


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