10/12/2021
I recently asked members of the Autoimmune Warriors support group what they wish more people knew about autoimmune diseases. These were the responses that I received. Please take a moment, especially if you know someone with an autoimmune disease to hear what they had to say!
• I am in excruciating pain all day everyday.
• It is mentally and physically exhausting to be in constant pain.
• Just because I look okay on the outside, that does not mean I am okay physically or mentally.
• “This is directed towards those who make decisions about eligibility on disability claims: I suffer from intolerable pain constantly. No matter the job, there are no employers who will be willing to hire me for only a 3-4 hour shift, be able to meet my physical restrictions put in place by my doctor, give me a couple days off between shifts to recover from the last shift before being scheduled to work again, and put up with multiple upcoming surgeries and recovery time as well as almost weekly appointments with doctors and specialists.
• “You can’t judge a book by its cover. Looking fine does not mean a person is fine.”
• “How exhausting it is to have your body betray you.
• That some days are better than others. If you catch me on a good day it does not mean that when you see me on a bad day I can force my self to be the same as I was on the good days.
• That they affect your entire body, from blood, to bones, to organs.
• Children can get arthritis too and just because someone is young does not mean they are not affected by a autoimmune disease.
• That it is a constant rollercoaster of ups and downs. I may wake up in the morning feeling fine, but two to three hours later I will feel terrible. It is completely unpredictable.
• That they understand the low energy, brain fog, and mood swings that can come from the constant pain and fatigue caused by autoimmune diseases.
• That when you are going through a flare it is extremely difficult to keep going as a “normal” person.
• How difficult it is to find a doctor that truly listens and does not gaslight you or make you feel like you are not experiencing what you know you are experiencing.
• Fatigue is real and can be EXTREME.
• That nobody really knows exactly what causes them yet.
• There are no “magic” cures, only treatments that can slow the damage down. These treatments also involve many side effects. Some side effects being very dangerous as well.
• That I have a war going on inside of me.
• How time consuming it can be to have so many doctors appointments, trips to the pharmacy, physical therapy, possible surgeries and procedures.
• Believe me when I say “I have hit a wall” and need to rest.
• How depressed these diseases can cause you to be.
• That they are REAL!
• That autoimmune diseases are chronic evolving and progressive.
• There is a lot going on in my body and I am doing the best I can.
• That I really wish my friends and family would research my condition.
• There a bad doctors and there are great doctors; you never know what type you are getting until you are already there.
• You cannot push through a flare no matter how hard you try. You have to take the time to rest and heal.
