You’re Tired? But…You Don’t Work!

How is life treating you? Are you a student in college student working a job? Are you a mom or dad, that is taking care of the family? Maybe you are living with conditions that prohibit you from holding a traditional job.

Do I work?

I do not work a traditional, full-time job. I do, however, write articles and moderate for this migraine site (Migraine.com). I have been doing this for almost two years now. I also do a lot of volunteer things:

• I am an Oley Ambassador
• I am one of the admin for a women's veteran site
• I am a moderator for a Texas Gastroparesis site
• I volunteer in and service my local community (online hygiene drive/monetary donations)

Lastly, taking care of my own health, IS, a full-time, daily job.

How did I get here?

I used to work. I was in the military and even deployed. I got up at O’dark thirty (early). Did PT (physical training) Monday-Friday. My unit and I did field problems, were exposed to extreme temperatures, gas chambers, and other things related to being a soldier. It was a life that I signed up for. I married and had a child during this time as well.

Life then became difficult due to health-related issues. I ended up getting out. I had another child and was a stay-at-home mom, for a short time. After, I decided to go to school and work part-time.

What are my diagnoses?

During this time, I was experiencing an increase in multiple health issues. This included getting officially diagnosed with migraine during a hospitalization. Life just seemed like it was getting more difficult as each day/month went by.

I call myself a chronic illness warrior. I will not discuss all my issues here. I do deal with some rare and, not so rare conditions. Here are just a few: migraine, gastroparesis, Ehlers-Danlos Syndrome, and primary immunodeficiency, to name a few. Sometimes I ask myself, “What else will I be diagnosed with?” Then I say, “No matter what, I can deal with it.”

How do I handle the stigma of invisible illness?

Everyone does not get it. I know that it can be hard when others say things that we may not like. Those that we know may say things jokingly, and not think anything about it. Words can cut like a knife at times.

I have mentioned things like, “I've had a long day,” or “I am so tired today,” I have received some comments that bothered me. Most of the time, the comment to me, was said to be funny, but when you hear it over and over, it can seem hurtful.

Why can't people understand how much work migraine is?

I remember a conversation once in which I went on about how I had no energy and felt extremely tired. The person said, “How can you be tired? You don’t even work. You sit at home all day doing nothing.”

I must admit that it did bother me. I kept trying to make them understand. I said, “You just do not get it. Having chronic illness can be draining on its own. I do so much everyday with all my medications and appointments. Sometimes, that is all that I can do. I have no energy left to even take a shower, wash my hair, or get out of bed some days.” This conversation went on and on. They kept saying how they have to actually go to work and how easy my life is. I think they knew that their words were irritating me. They did jokingly say that they know that I do stuff, but it did not compare to them working. This is where I tell myself, in my head, that they just do not get it. I must remind myself that everyone cannot understand what it is like. It is important to not let these comments get to me. I will continue to focus on doing what is best for my physical and mental health.

Have you ever been in this situation? If so, how did you handle it? If you are struggling with how your current health issues are affecting your life, please reach out to someone to talk: text 988, find a friend, counselor, or do something that brightens your mood.