What the HHT?

A Voice for the HHT Community

Blissfully Ignorant or Hyper-aware?

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By Cassi Friday

OstrichDoes anyone else teeter between these two states of mind? My husband and I often discuss which is better – As the person with HHT, he would rather be more on the blissfully ignorant side. His symptoms are not very severe (no AVMs we know of, but a lot of nosebleeds), and his family rarely discusses their medical issues, if at all. As long as he is managing his own condition, he doesn’t like to read or hear about case studies, other people’s ailments or think about what-ifs.

I, on the other hand, want to know it all! Whether it’s about HHT, which affects him and our daughter, or about something going on with me personally.

My husband is plagued by the “ostrich effect.” That is, he would rather bury his head in the sand and go on with things. Whereas I am plagued with worry and compulsive research.

So, which is better? Being content, happy and embracing the “go with the flow and trust in God” attitude? Or being a little anxious, but prepared and vigilant? Honestly, I don’t think either of our views are particularly healthy, and we both struggle to find the middle ground and understand each other’s point of view.

Here are some tips I’ve tried to come up with to help us and others in our family deal with these issues.

For Obsessive Information Seekers Like Me 

  1. Don’t fall down the rabbit hole!

If I want to know something about HHT or another condition a family member might have, the internet can be a scary, scary place! It’s important to keep everything in perspective and get information from reputable sources that you understand.

  1. Respect each other’s wishes

As much as you may want to inform your husband of all the things about his genetic disease, remember, he does not want to know for a reason. He chooses to not let it worry him or give him anxiety. If he wants information, he will seek it out. Also, some people are just not comfortable sharing their medical problems with others. Just because you are an open book, doesn’t mean everyone else is too.

 For Those Shying Away From the Information Highway 

  1. Embrace enough knowledge to get by

Be sure you know the basics of your condition and how to identify when things are not normal. You don’t have to know everything about HHT, but you do need to know your body and be able to clearly and competently communicate your needs with medical professionals.

  1. It doesn’t just affect you!

I always urge my husband to keep an open mind when I try to tell him something new. A particular HHT symptom may not affect him, but it may affect our daughter and other future children.

  1. Talk about your family history with those that matter.

Knowing your family history is crucial for clinicians to make an accurate diagnosis. Even though every person with HHT has varying severity of symptoms, a family history is still very important. Be open with your family members – it could be a piece to the puzzle that is missing for someone else!

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