Thoughts on "Faking It"
“Stay Sick, and you aren’t trying hard enough,Make improvements, and you were faking it all along.Share your story and you are seeking attention,Keep it to yourself and you arent really that sick.”
Well ain’t that the truth. Thank you random pintrest quote…every line is how it truly goes. Having primary immune deficency is like the Cercesi walk of shame in game of thrones. Shame! Always sick with something. Again. Never ending infections and antibiotics. Getting a new diagnosis every month. Always Fatigue. Judgement from others discussing whether you are doing ok-ish and thinking positive … again. Doctor visits, copays and deductibles that are met in January with no end in sight. We don’t talk about Bruno and the stigmas regarding invisible chronic illness. And how difficult it truly is.
When did society decide to judge whether or not you “look” sick enough for thoughts, kindness, empathy and compassion. Chronic invisible illness is socially unaccceptable and it’s not satisfying to be a patient/friend who dosen’t get well soon. I get it. Sometimes the disease wins and we have to do things different or not at all. I am frustrated too.These days rare disesae translates into insignificant. I understanding empathy is exhausting to give. If a disease is not some thing you heard of, the insensitive comments come. It’s not a contest…I hope we all make it. I have learned so many lessons in the last 9 years. And as hard as it is, this too is a blessing.
Honestly, my gene pool didn’t have a lifeguard on duty that day and it wreaked significant and life threateneing havoc on my immune system . I will forever be a severely immunocompromised medically demanding patient. I will not make antibodies. My complement system wont cascade. I will not respond to most vaccines and I will pay for public health decisions and others choices. Being a medically retired RN, we always taught our patients to maintain a postive attitude. To get up everyday and perform our activities of daily living. Clean up, move and eat healthy. Exercise. Hydrate. Hairspray.. and lots of it. Tylenol. I do these things to maintain some mental self esteem and make the most of good days. When I don’t look “sick enough” I get the faking it vibe. I stopped smiling in pictures, so I looked like I felt. Can I not have dignity in illness? I want to enjoy my good days and not publicize the bad. I value every single decent day.We live in a world obsessed with business, self health, growth and the inspirtaional “battle” of overcoming a life threatening disease. But there really isnt any room for acceptance when medicine and science can’t fix something yet. Like I should try a little harder. Cmon Stacy.. make thoses B cells…just drink a protein shake, and have you tried…? Like I have not searched everything I can on the internet to make this better. Its a good perspective from Brenee Brown. I live in that gray area for sure, but some diseases can only be carried and endured. Not cured. For some there is no treatment..you are stuck forever with this creeper. Like at my gene pool without hairspray.
On the bright side, this box of darkness has given me a beautiful perspective on enjoying the normal and ordinary moments. Anthony Carbahal, who has ALS said “You can still have a meaningful life.. If …you evolve with your circumstances.” Word Anthony. Duly noted. I am conscious gratefully grateful when I wake up. I have empathy for others when they are ill and value true friendships. Thank you always to the friends who still hang with me, even though I come with terms and conditions. I love you forever. Embrace change. Yell plot twist when it dosen’t work out. Enjoy the Tylenol. Give as much as you can, and set boundaries like a madwoman. Quality of life is all that matters from here on out, so go ahead find your happiness on the good hair days. Smile in your pictures again. Be YOU regardless of judgement. So in 2023 I will continue smiling and making plans for my future..gene pool permitting. Hopfully my lifeguard is on duty and has that hairspray, IVIG, and tylenol to help me get through this adventure of life. And hopefully I will still have a smile in my pictures…always.
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