8 Things I Wish People Knew About Autoimmune Disease

1. Having An Autoimmune Disease Does Not Mean You Are “Unhealthy”

UNHEALTHY – This word is such a trigger for me. The general population does not understand what it is like to live with a chronic illness or autoimmune disease. I try my best to have patience, and remember this. BUT, I cannot stand when someone says I am unhealthy or not healthy. Just because I take medicine, I am unhealthy? Just because I go to the doctor frequently, I am unhealthy? NO. In fact, it is quite the opposite.

Because I have an autoimmune disease does not mean I am unhealthy. I did not choose this life. Nothing I did caused this to happen. Repeat that to yourself. You did nothing wrong, this is not your fault. People with autoimmune disease probably live a much healthier lifestyle than the average American. Yet, we are always to blame for our own bodies failing us. 

2. Thanks, But No Thanks – Unsolicited Advice

One thing I have noticed more recently, is that plenty of people out there love to tell me how to manage my autoimmune disease. I have been living this way for 25+ years. I appreciate your concern for my well being, but I do know my body best. I have likely researched every symptom, treatment, and medication already. I know it is because they care, and want the best for me, but it can be A LOT at times.

These are my favorites: 

1. You need to exercise more.
2. You need to eat healthier.
3. Are you taking all of your medicines the correct way?
4. When is your next appointment, what did the doctor tell you?
5. My brother’s wife’s cousin’s friend had the same thing, and they did xyz…

I would love to tell you all of my smart aleck remarks to all of those questions, but my mother raised me to be respectful. See the funny thing is though, I actually live a very healthy lifestyle. Don’t you love when people tell you what to do, then don’t even bother taking care of themselves? Oh how I wish I had that luxury. That is one of my ultimate pet peeves!

3. You Are What You Eat

The best is, “Emily, you probably shouldn’t eat that.” I AM STILL HUMAN. Sometimes I just want a scoop of ice cream! I will be the one dealing with the consequences, not you. And if I shouldn’t be eating that, then you probably shouldn’t either….Let that one sink it.

I invested a lot of time following a strict anti-inflammatory diet. You can read about that journey here. I learned what foods are triggers for me, and cause my symptoms to flare. I mostly stay away from gluten and processed sugar.

I cook 90% of my meals. It is just easier knowing what goes into my body than guessing. It’s also questioning every meal wondering if this will make me feel sick, and if I should give into my cravings. Should I be polite and just eat what someone is offering? Am I too complicated or ridiculous to ask for a gluten free menu? The list goes on…

Having an autoimmune disease is so much more than just taking a pill every day.

4. Every Decision Matters – Even The Small Ones

I mean it, literally every decision matters. I am a person that has to be doing something constantly. I need to be moving non stop to feel “productive.” My body quickly said, “you’re joking, right?” I plan out each day, saving my energy for the next. If I have to be at a social outing or doctor’s appointment for several hours, I have to plan the day before and after. This is to make sure I have enough energy to make it through.

It is deciding if I commit to something in the future, will I be able to make it or will I feel too exhausted that day. Will people think I am faking it if I “conveniently” miss an outing because I am too physically and emotionally exhausted?

If I go into the grocery store will I have enough energy to carry in the groceries when I get home? Will someone be home to help me? If I go out to lunch, is there close enough parking or will I have to walk several blocks?

If I exercise or walk too far, will it take me too long to recover? If I travel, will I get sick and risk all of the improvement I have worked so hard to recover?

I plan every trip out of the house. Making sure I have enough water and medication, should my day go awry. You would literally think I am a doom’s day prepper, but I don’t want to find out what would happen if my Remodulin pump would happen to fail on me.

Literally, every decision comes with a pro and con.

5. My Illness Is Not Invisible To Me

Just because I look fine, doesn’t mean I am. I used to pushed through everything. I never considered myself sick. I was one of the fortunate ones who had a mild form of disease.

Well, since my PAH diagnosis I am hypervigilant of everything I do. At one point in my journey, I found myself relying on a wheelchair on several occasions. That was so defeating to me. I am a physical therapist, so I can appreciate the need and use of assistive devices. However, when it comes to using it yourself, it feels like defeat.

I could see people looking at me, like what could possibly be wrong with this woman that she needs a wheel chair. You can walk to your seat perfectly fine, but you can’t walk around this store, airport, zoo?

I may look like someone who is physically capable and perfectly healthy, but internally my heart felt like it was pounding out of my chest and it felt like I was breathing through a straw all at the same time.

6. I Am Exhausted

I used to rely on coffee to give me the energy I needed throughout the day. I try to stay away from the caffeine habits now to help my heart rate. Occasionally, I resort to an afternoon coffee to help me get through whatever is needed.

I now know when I need to rest. I literally crash. It could be something so simple too. If I do too much the day before (as in run errands or attend something social) I am exhausted the next day.

I recently took a trip where I travelled 8+ hours by airplane. I came home from that trip and slept for at least 18 hours the next day. I’m not even kidding. I couldn’t get out of bed. When I did, I went straight to the sofa.

My brain turns to mush. I have so much running through it all the time, that in itself is exhausting. It takes a lot of planning and effort to leave the house, so if you see me, you are one of the lucky ones.

7. My Autoimmune Disease Is Unpredictable

Trust me on this one, I hate it more than you do. I’m sitting in the doctor’s office trying to answer how I have been feeling. One time I went on a walk for 15 minutes and felt great. The next time I tried it, I felt I was going to pass out.

I can’t always go by past life experiences to know how my body will handle the same event the next time around. I hate answering the question, “how have you been?” because it is so fluid. Usually, when one symptom calms down the other ones decide it is their time to shine. I’ve never had anything in harmony at all once.

Sometimes I am great, then the next day it is like starting all over again.

8. Be Kind: Living With An Autoimmune Disease Looks Different On Everyone

Everyone is fighting a battle. We may not know it from the surface. You never know what people may be going through, because we often hide it so well.

I’m not writing this to hate on people for not understanding. I don’t expect anyone to understand what it is like to live with a life-threatening, chronic disease. We all experience it so differently. I am writing this to give you a glimpse of what my life is like.

I am writing this so you can look at each person with kindness and understanding. Slow down and see the beauty in each person. A smile or compliment can make someone’s day.

If you are suffering from a chronic illness, I know you are doing the best you can. I know you are trying as hard as you can to live each day. I know you are trying to fit a square peg into the round hole of this world.

Don’t give up.