The Truth About My Life with a Chronic Illness
by Krissy Ward
Living with a Chronic illness(es) is really lonely. I wish people knew how much it affects our mental health. For me, I have trouble asking for help because I feel like I always need help. I feel guilty... A LOT! It's way more complicated than just the regular aches and pains that we have to try to function with. The fatigue in itself is EXHAUSTING! It interferes with everything and makes the simplest tasks feel like climbing Mount Everest.
Here's what some of the Warriors had to say....
"I wish people knew that I handle intense pain every single day, therefore I handle pain differently than "normal" folks. Even doctors fail to understand how people with chronic pain function with a high level of pain; so that if I have to seek medical help for my pain, it means I'm in trouble. It means that my normal coping mechanisms have failed me and I'm freaking going out of my mind with blinding, real pain." - Adina
"I wish people knew how guilty I feel that I never feel good... that it hurts me when I can’t be there for family and friends. Even though I look ok, I’m not! The pain never stops, That’s why it’s an invisible illness." - Melissa D
"I wish people knew that it hurts, yes every single day... I wish people knew that even though you say you are tired and in pain from other things, such as; work and the gym, that doesn’t mean you understand my condition. If you felt the pain I felt, you would be in the hospital. You wouldn’t last a day in my shoes. The fatigue I feel every single day can’t be cured with coffee, it doesn’t matter how many I drink, it doesn’t matter if I get a good nights sleep, it still feels as if I didn’t sleep. I wish people knew that even though you see me getting things done, I’m doing them under extreme pain and fatigue. That I hate this disease and I mourn the person I used to be. Sometimes, I lock myself in my bathroom just to cry so my daughters won’t see me. I hide my pain well. I wish people knew that it’s not only physically exhausting, but it’s mentally exhausting. I’m tired of both. I try to remain positive, but sometimes even that seems like too much to do. You will never understand how it feels and I hate when you compare your pain to mine. It took me several doctors and specialist to be diagnosed & some still don’t comprehend the severity of it, yet you want to compare your pain to mine? One simple task is too much for me. It drains the energy that I don’t have. It hurts me. I’m tired. And no amount of sleep will help with the exhaustion. I know I’m doing a good job because well even in my pain, I’m doing more than you. I refuse to quit. But it hurts. It really effin hurts. And it’s not just my body anymore, it’s my soul, my mind and I don’t think you will ever understand. You see you can plan things, but I can’t because I’m too worried that I might wake up with excruciating pain that’s only going to make me feel worse if I planned something that day and can’t even do it. So I quit planning things. I’m scared of how my body will hurt, I’m scared to do things I’m scared to over work myself because my body pays the price. I’m exhausted. I wouldn’t wish this on anyone.. but I wish you knew what it felt like.. just one day as selfish as that sounds.. just so you can understand." - Vanessa
”I wish people knew that I’m never NOT in pain, so if I’m hurting bad enough to say out loud that I’m hurting, it means I’m REALLY f’n hurting.” - Lindsey M.
"I wish people knew that even with pain medication and treatments I still hurt." - Catherine A.
”I wish people knew that it literally never goes away, ever. If I talk about it, I’m REALLY struggling and if I don’t mention it, I’m still really struggling..I just can’t talk about it every single time or all I would ever do is complain... and just because I’m stubborn and push myself to do more than I should, does not mean that I’m okay..it just means I’ll most likely regret it later and need longer to recover.” - Ashley S.
"I wish people knew that everyday I feel tremendous guilt that I cannot keep up. And I usually pay dearly for a "good" day." - Karen M.
"I wish people knew that my pain is not normal, I have intense pain even though I'm smiling. Just because I'm not crying or rolling on the floor does not mean that I am not in pain. I wish my parents understood this." - Aishah S.
"I wish people knew that hugs can hurt and every day is a challenge, but I keep smiling... the smile is so they will feel comfortable. Mentally, I am not there at times because I am dealing with intense pain at the moment and for them to be patient and not take my checking out personal." - Michelle M.
"I wish people knew that keeping my fitness up doesn't mean the pain is gone. It feels like I'm at war every step, pump, rep, set, etc. If I'm down about my pain, it can make working out like, "I hate everything", "this fucking hurts, but I'm doing it", etc." - Justin
"I wish people knew that I still have to do stuff even though I'm in excruciating pain. Today I went grocery shopping. I didn't want to, but I needed to. I saw people I knew and right away it's "oh you must be feeling better." No, but I still need shit at the store, pickup was full for today and no one delivers out in the middle of nowhere where I live. My cat was completely out of food and treats so I couldn't wait." - Jean
A wish is a strong desire for something that cannot or probably will not happen. Here are just a dozen of a thousand wishes from the warrior family.
Dear family and friends, please do what you can to make our wishes come to fruition.