Selena Writes: A Letter to the Healthy People In My Life
I DID NOT WRITE THIS LETTER! For the original, please follow the link above. Many, many thanks go to my wonderful friend Selena (@selenamki) for allowing me to share this beautiful letter with my readers!
Dear Healthy Person In My Life,
I live with chronic illnesses: fibromyalgia, myofascial pain, thoracic outlet syndrome, dysautonomia, chronic Hepatitis C infection and type 2 diabetes.
They are called chronic illnesses because currently there are no cures for them.
Without a cure, these chronic illnesses will be a part of all my days.
The only thing I can do is manage my chronic illnesses.
Managing my illnesses takes a team effort between my doctors, my supporters and myself.
The most important way I have found to manage my illnesses is through self-help techniques (like pacing, planning, resting, asking for help, setting limits and saying no.)
Managing chronic illnesses is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits.
There is no vacation, no escape from chronic illnesses.
Having chronic illnesses means that my life has been forever changed.
For example, I can no longer remember what it feels like to have a day without chronic pain or chronic fatigue.
Having chronic illnesses doesn’t mean that I am a bad person or did something horrible; they are not a punishment for past sins, weak character or lack of action on my part.
Having chronic illnesses doesn’t mean I can’t do anything, but it does mean that there are some things I can no longer do and changes the way I approach doing everything else.
Having chronic illnesses means that I will disappoint you with my lack of ability to be an average, normal, healthy person.
You may feel frustrated, angry or upset with me–know that I feel all those emotions and more when faced with my physical limitations.
Know that my goal is to live my best life despite chronic illnesses.
Know that I have not given up hope that maybe one day things will be better for me.
Until that day, managing my chronic conditions has to be my number one top priority.
The best ways you can be there for me and back my efforts to manage my chronic illnesses are:
to love me
to listen to me
to believe me
to support me
to help me
to respect my limitations
and to be patient with me.
Thank you for reading my letter.
#sensitivity #communityeducation #autoimmunedisease #support #insensitivity #systemiclupuserythematosus #autoimmune #spoonie #chronicdisease #activism #fibromyalgia #SLE #fibro #lupus #letter #managingillness #awareness #ignorance #autoimmuneillness #chronicillness #whatlifeislike #OhMyAchesandPains