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I recently got a new job in customer service. It’s the first time I have had a full-time job in a while for health reasons. As someone with alpha-1 antitrypsin deficiency (AATD), choosing a job takes time and a lot of thought, and I asked for a lot of advice.

I am definitely very glad I am able to hold down a full-time job besides being a columnist for Rare Disease Advisor. For a while, there were no jobs in my area that I could do because most wouldn’t allow me to sit for most of the day. Now I found one an hour away from me that I love.

Not everyone with AATD can work full-time. Some of us cannot work at all. Generally, any chronic illness combined with breathing issues makes every symptom worse.


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So, I want to honor those who worked as long as they could but knew when it was time to quit. There are also those of us who had to go on disability. They have to be brave to take care of themselves full-time.

For instance, some cannot do basic tasks without oxygen. I always factor in the level of fatigue I feel when I choose a job. It seems energy waxes and wanes with me, so I have to choose something that won’t drain me too much.

A big reason I like this job is that my employer is happy to be respectful of any way AATD affects me. I am very blessed to have such a job. That has not always been the case.

When considering a job change, I also think about the financial aspect too. Can I afford to live on this? Money is not everything, but it does help a lot.

Related to that, does it provide insurance? If a full-time job pays well and doesn’t have insurance, I begin to feel uncomfortable immediately. I know it’s only a matter of time before I go to a doctor’s appointment and need new tests done, adding up expenses.

So thankfully the job I have because it has the three things just mentioned. It also has an emotional factor, besides the fact that I like my coworkers, I feel good about what I do. I can work and enjoy helping people, all at once.

The last question I would ask is, do I need to move for this job? Because moving requires energy and muscles, I usually ask my brothers and dad to help. If I was going to have to move halfway across the country, I probably wouldn’t take the job.

There is something to be said about being near family with chronic illness. I like living close to them because they are so supportive, and if I ever needed help, they would be there for me. I have learned from illness. I learned not to take my ability to get up, start my day and drive to work for granted.

There are other things I consider, too. This job was a little too far to drive to every day. So, I am in the process of finding a place to live closer to my place of work.

At my new job, I appreciate that when I need a time out, they make room for it. I feel a sense of belonging and respect there, which I have found to be rare. Their accommodation has been very much appreciated.

Therefore, I feel appreciated and much more willing to give 110 percent of my abilities to my work. Although I am in the honeymoon phase of it, I have no fear about it. I think a lot of employers take advantage of the many people who are sick and don’t know the employer is not allowed to discriminate.

Now, I’ve learned to spot great jobs. AATD patients can take comfort that great jobs are out there. If the patient is physically able to do the job, they would likely enjoy the concept of working.

I think it has really helped me, anyway, to know I am supporting myself. If I do need disability at any time, I know that I did the best I could and got the best job. I really like knowing I did everything I could.