I Want You to Know

People with chronic illnesses are often misunderstood.

We can't expect normal people who have never been through the same things that we have, to understand our struggles, so we are usually pretty tolerant of the things that are said to us regarding our health conditions and how it affects our lives. 

Here are some things that I personally wish that everyone knew about me, and most ring true for any person battling their own body with a chronic condition. 

It just might make you understand me a little better ;)

-Yes, my condition is real and I have been diagnosed by a doctor.

-I really hate complaining, but sometimes its so hard when you are alone all day and just need to vent.

-If you think I don't look sick, it's because I have invisible illnesses. I'm glad you think I look good, but how I look is not an indication to how I feel.

Don't say, "I hope you feel better soon", because I won't. I might feel better from day to day, but there these are chronic conditions with no cure. Instead, just ask how I'm feeling or if I'm OK. Or if you don't know what to say, then don't say anything.

-My pain and fatigue changes day to day, hour to hour, and minute to minute.

-I'm not tired, I'm fatigued. Even if I sleep all night, I never wake up feeling rested. Sleeping long hours or taking naps do not cure fatigue- it never goes away. You when you have the flu and your entire body aches and you feel to tired and weak to move? That is how my body feels every day. Sometimes I can fight through it, but most days require a nap. I'm not lazy, my body just physically cannot function and I have to lay down.

-I know my body's limits and I know not to push myself past my threshold or I will pay for it for several days later. If I say I can't do something, I really can't do it. You don't have to understand, just believe me when I hit my limit.

-The cold temperatures make many of my conditions worse. The cold air makes my muscles contract and go into spasms which is very painful. If you have ever broken a bone or had a joint operated on, you know that it never feels the same after that, and that weather affects how it feels. My knee, shoulder, and back pain increase with cold or rainy weather.

-My body does not regulate temperature well due to dysautonomia. I have a hard time getting warm when I'm cold, and cooling down when I'm hot.

-I am on many medications for my conditions, so if I'm not dealing with pain, anxiety, depression, insomnia, migraines, fatigue, then I'm dealing with nausea, dizziness, and brain fog from medication side effects.

-I know you mean well, but I hate it when you say "Have you tried this or that for your conditions?" Trust me, I do countless hours of my own research on treatment options and have tried many. Chances are the thing you saw on TV or that Dr. Oz says or that your friend's sister tried is not actually effective- or I've tried and it didn't work for me. 

-Don't give me medical advice if you aren't a doctor.

-Yes, I have modified my diet to help with my issues.

-Sometimes I just want you to listen to me. I don't need suggestions or advice, I just need to talk or vent judgement-free.

-Don't ever tell me that getting old is hell. I hear it from people constantly! You know what's worse than getting old? Being young and unable to enjoy your life.

- I am very matter- of- fact and realistic. about my health issues.

 I'm not negative, I just know what up I'm up against and like to be honest and upfront about it. 

I often downplay the degree of pain. I think I do it mostly so that other people don't feel bad for me or put extra burden on them.
I do it to make other people feel more comfortable. Because no one knows how to react when when you say "No, I'm not doing well today."
I do for myself to to try to convince myself it's not as bad I think it is.
I do it for myself to pretend to be normal.

-If you don't know what any of my conditions are or how they affect me, ask me or Google it. I don't mind if you ask me! I prefer you ask than to have no clue about any of it. These conditions are all a part of me, so to really know me, you need to know what they are.

-Being chronically ill is very lonely.

-It's hard for me to make plans when I literally don't know what I will feel like each day.

-When I'm having a flare, I can act very grumpy and on edge. It is nothing personal, it's just hard to have patience with myself and other people when I'm having a bad day.

-Even if I cancel or have to reschedule plans, please keep inviting me to things! I do my best to be social when I can and it helps to know that others are thinking of me!

-Sometimes I prefer to be alone. Its easier to be alone than to have to be around people who just don't understand you.

- I know I'm not terminally ill, but just like terminal illnesses, my conditions have no cure. They won't go away. This is my life.

-I still have hope that better treatments will be developed that will allow me to live the life I hope to.