Choosing When and How to Talk About My Disease

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by Allison Ross |

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“Do you want to get dinner this weekend?”

It’s a simple question with a complex answer for a chronic disease patient. What time will we eat? At which restaurant? Does the menu suit my needs? Do I have the budget for it this month? Will I have the spoons to leave the house by that point after a full workweek?

These issues cloud my mind and obscure any easy answer to the invitation.

If the person asking is a friend, I can be more open with them about my concerns. But if they are a romantic interest, it opens a Pandora’s box of anxiety. Would this be the appropriate time to tell them about my vasculitis diagnosis? Sometimes it seems that nothing ruins the mood quite like a serious discussion of health issues.

The topic of dating is among the scariest for younger patients. When do you tell someone you’re unwell? Do you let it come up naturally and hope for the best? Or do you calmly and confidently bring it up right away, at the risk of sounding like your illness rules your life?

Either way, anxiety can occur when a potential mate may not be willing to continue a relationship with someone viewed as “high maintenance.” And that can wreak havoc on our emotions and self-esteem.

I’ve been in remission for almost nine years, meaning I’m not currently experiencing symptoms. Therefore, the subject of my health doesn’t come up as often as it used to, partly because I look and act more healthy when I’m not dealing with active inflammation. My health also is under more control, and I’ve learned how to better talk about it (or not).

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I’m now married to an incredibly supportive person, but this conversational stress still plagues me when meeting new friends. It’s difficult to appear fun or easygoing while continually being worried about an eating and sleeping schedule, rarely staying out late, and frugally saving money for medical bills.

Even in normal chitchat, the subject of chronic illness can be hard to avoid, like a bump in the road that approaches too quickly for a driver to swerve around.

With any mention of diet or exercise, I have a wealth of carefully researched material to share. The topic of a hospital stay is something I’m acutely familiar with. And references to meds, treatment, or mental health bring up hundreds of anecdotes I can relate to. The trick is knowing when it’s acceptable to interject rather than forcing a conversation into awkwardness.

A simple sidebar of “I’m OK, it’s under control these days” puts friends’ minds at ease, assuring them that they didn’t stumble into unwelcome conversational territory. I often remind them that as a board member of the Vasculitis Foundation, I’ve chosen to speak publicly about my disease. They don’t need to tread lightly or avoid the subject when I’m the one who’s opted to embrace awareness of it.

In the winter, I take extra precautions, including staying in my house for the entire month of January. Friends are familiar with this annual hibernation.

Because I have a hectic work schedule in December and a birthday the first week of February, January is bookended nicely for a season of rest, recuperation, and relaxation. I badly need these four weeks, not only to stay mentally balanced, but also to avoid the cold and flu season. I’m open with everyone about why I stay indoors, and it fortifies my resolve to continue doing so.

Ultimately, the elaborate world of human relationships can be distilled to one factor: whether I feel comfortable sharing my personal health status in any given situation. And those who care about me tend to respond appropriately.

The following are three of my favorite affirmations, and they may help you, too:

  • “However and whenever I choose to discuss my health is something I can control.”
  • “People worth surrounding myself with will treat this sensitive information respectfully.”
  • “With or without my disease, I am still me.”


Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.


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