Relationships can be hard to navigate. For someone with alpha-1 antitrypsin deficiency (AATD), managing relationships can feel like being at sea during a storm. This goes from a doctor-patient standpoint to personal relationships.
So, why is it so hard for people with AATD? Of course, most people with chronic health issues would say it’s hard for them. But for us, much of life is spent figuring out how to communicate about an invisible condition.
My pulmonologist is very knowledgeable about AATD. But my primary care provider had never heard of it and certainly had never diagnosed a patient with it. When I first explained my diagnosis to her, I had to spell it and explain what the disease was.
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During my next visit, the nurse at the same office thought I was getting augmentation therapy from a health food store. They did not realize it was medicine from a pharmacy. I was a little disappointed they hadn’t really researched it. In fact, that might be an understatement. This is an example of why I have to be my own advocate. I always have to be ready to push to be heard and not take anything personally.
In that particular scenario, my pulmonologist sent the test results to her and that helped. This put her mind at ease. I felt better too, although I can understand the confusion.
So, if the doctor doesn’t know about AATD, the harder it will be to use proper care in the future. This means I must be careful to explain things correctly. It takes patience and a firm response to any question I am asked.
I must be patient with my friends, too. AATD is complicated, and at first glance, I don’t look sick. I learned long ago how to not draw attention to any weakness I have unless it’s overwhelming.
The problem is, this is pure skill, not health driven. I have come to understand from others that it is best not to bring up feeling sick unless it’s needed. I learned to keep my mouth shut. And that means most of the time.
All it takes is an invitation to go on a long hike or to a bonfire. I must gracefully decline by telling them why I can’t. This usually helps me feel better and helps my friends understand; after all, they had good intentions.
There were some who couldn’t treat my body with the same respect that I must. They didn’t understand that, for me, surviving means saying no to some things. I couldn’t sustain a friendship for long with those “friends.”
Therefore, when it comes to romance, an AATD patient knows going into a relationship means taking risks. These risks often include personal rejection. There is also potential physical harm if the other person is abusive in any way or inconsiderate.
Lately, most people are at least somewhat health conscious because of the pandemic. Most people will respect that I am more vulnerable to lung issues than others. I feel much better after we’ve talked about it.
What I don’t like is wondering when and how to let a man know that I have this condition and what it could mean for us in 20 years. I don’t want to scare him off. And I certainly don’t want to hide anything from him. Sadly, I have heard of too many divorces in the lives of AATD patients. I especially hate hearing that the patient was accused of not being responsible. The spouse or significant other sometimes sees them as being sick because of life choices.
Stories like these are very sad and they don’t help ease anxious thoughts. One must weigh the cost and effect of allowing a person into one’s life and whether or not it might be worth it. It’s a question I have to really take time to think through.
This isn’t easy because if a strong attraction is present, a person may or may not be themselves. They may not have the best judgment at the time or be able to see problems. They may need people around them to help them out as well as to calm them.
The AATD patient needs to give and receive certain things and in so doing, build community. They need interaction and a sense of belonging. There is no formula, but we all need people.
