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As the one person who has spent their entire life with me, I feel I have come to know my fears and personality. There are certain ways that alpha-1 antitrypsin deficiency (AATD) has created a desire to “hold back” from others. The way it manifests is multifaceted and has changed over time.

First, while I was never an athlete, I’ve noticed I engage less and less in competitive sports. This is due to shortness of breath upon exertion. I also gave up on gym memberships as I was spending a lot of money just to do some walking; I wasn’t into muscle-building.

It may not be the best, but it’s not the worst defensive mechanism I have. I also learned how to hide shortness of breath from others. The best way I can describe this skill is smiling while I take a sip of water or sneaking an inhaler into the bathroom.

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In addition, I discovered I fear abandonment. To keep abandonment from happening, I must be somewhat aloof so that I can be “my best self.” That way I don’t worry about what others are thinking.

There is some truth to this. On one hand, it’s good to allow myself some space and freedom to pursue certain things. But I justify this as an excuse not to be vulnerable more often than I care to admit.

In many ways, I have gotten over my fears by embracing community in my life. And in other ways, I can see new defense mechanisms developing. So there is growth mixed in with some new issues as life happens.

Why would I want to hide that I’m sick, you ask? I don’t want to be seen as “the sick person” at all.

It’s pretty unclear that someone is chronically ill until you see signs like a wheelchair, an oxygen tube, etc. I don’t have any of these, so why would I feel the need to hide? Basically, I am afraid because of past pain.

I’m afraid of being a burden. Moreover, I’m afraid to be seen as a burden. And I definitely don’t want people asking me how to spell AATD and then telling me how to better my life for 5 minutes.

Read about experimental therapies for AATD

When people criticize me for how I’m handling my disease, it can feel like rejection because they assume I need the information. Depending on the tone used in the criticism, I might learn from it. But I have probably already heard someone say just what is about to come out of your mouth.

Additionally, if you asked me how I am on a really bad day, I might be honest and say, “Oh, it’s been a rough day, but I’m alright I guess.” Right then I’m gauging your desire to know more. Or, I might say “Hi! I’m doing great, how are you?” with a little more gumption than usual.

On a bad day, that last one is a lie, and the former one being a better response. But one thing you will almost never hear me say is “Wow, today totally sucked. I’m so sick and tired of feeling sick.”

I don’t want to scare you away, but honestly, that’s sometimes how I feel. So that’s why I lie sometimes or give the “Oh it wasn’t the best, but it wasn’t the worst” answer. I always desire to temper my negativity.

Sometimes I do that because I want to listen before I say more. Often, it takes a special person to detect when I am in pain or struggling physically, and I take a certain degree of pride in that.

I like to be in control at times, and it’s because of fear. Fear can be healthy, but not always. It can quite negatively affect relationships, thus creating more anxiety and/or depression.

This can hurt a person during a bad week. Believe it or not, very few people want to be called “Negative Nancy.”

It doesn’t have to stay negative. I learned to be both honest and more lighthearted on the good days and the bad by being self-aware.

Hopefully, this helps explain why someone with chronic illness may hold back socially. If you make it your ambition to support them, they may always be loyal to you. Maybe you’ll find a new friend.