This subject has come up a lot not only since being diagnosed but also since the pandemic.
Chronic illness is no joke. There is this general conception that most chronic illness sufferers are faking their illness. Well let me tell you something, it is the opposite. Most Chronic Illness Sufferers are faking their wellness for you, for work, for family and friends. This isn’t the first time I have mentioned this in a blog. Someone who is sick will put on a show and act like they are fine because it is easier for others to believe so. Most persons do not want to hear about the pain and suffering an illness causes someone day in and day out. Acting is also a way of functioning . Mind over matter. “If I believe I can function today, I will function”.
Chronic illness creates Chronic Warriors who are lying to you about how they are truly feeling. This is to protect you along with themselves. This is to make you feel better and to avoid a great deal of judgment and expectations. Everyone has an opinion about the sick and how they should care for themselves. There is also very little empathy shown. When you ask a Chronic Warrior how they are, The most you will hear is “I’m tired”. “How are you?” “Oh, I’m good. Just tired”. This is our catchphrase.
I struggle with not being authentic in expressing how I am really doing. I am not just fine or just tired. I am sick… every damn day. Some days are better than others but there is not one day that I do not experience pain in some form. Most times, that pain I can ignore and go about my day, functioning in Society and functioning with my family. BUT there are times when I cannot function. Where the pain is overbearing and I cannot put on a show. This is when I do not hide or lie. This is when I will cancel plans or leave early. This is where I will terminate conversations and state: “I am not well, I need to go to bed”. Not because I do not have time for you. Not because I don’t want to be with you.. Its because I am not well and my tolerance for pain, for exhaustion is done for the day. I have nothing left to give.
That is the whole truth and nothing but the truth. I AM SICK and I need you to believe me.
Chronic Warriors want to be a part of events, gatherings, conversations more than anything. They want to be independent and complete tasks for themselves. They want to be a part of the workforce and family dynamics however for them to do anything, they must pay attention to their body. When their body tells them, you’ve had enough or its time to shut it down. Then it is time to rest. If we do not rest, we could flare or even worse relapse. A flare and/or a relapse has significant consequences and causes permanent damage. Relapses can also spike risks of heart attack, strokes and other life-threatening issues. Many autoimmune diseases are life threatening.
There was a time I attended my cousin’s birthday party. It was a Saturday night, the night after I received my infusion. I stayed late, well, late for me. I had fun. I socialized and celebrated. When my body told me to go home, I listened and started to make my rounds of goodbye. Many made comments of me being a party pooper and poop’n on the party. BUT the worst was when I was outside leaving, my husband (who was significantly under the influence) got upset and said: “Why are you always ruining everything, why can’t you just stay and have fun?” (insert eye roll -we already arranged I would go home and he would take an Uber). I could hear his disappointment but at that time, it didn’t matter. I had to go home. It was time to shut it down. For me to shut off and heal during sleep for the next day.
I am sick and I have to act like I am sick when my body has had enough. When I am not well, I need you to believe me.
Chronic Warriors already push themselves to their limits every day by just functioning. Cooking, cleaning, even hygiene routines cause pain and exhaustion. But we push through because we want to live normal lives. We didn’t wish or ask to be sick. It just happened. It is not our fault. If we had our way, we wouldn’t be sick. We would give anything for a healthy body.
So the next time someone says, I am sick. I’m not well. I need time. I need to rest. Believe them. Believing them is supporting them and helping them live anyway.