Recently, I find myself having to 'prove' my disease, symptoms, and pain to others as though to make them and myself believe that it's INDEED real. (to my fellow warriors, your disease and pain is enough-- you're enough)
I feel in my bones the doubts and judgements (even myself) that sows the seeds of negative emotions affecting my mental health.
Why does my disability have to be recognized and supported in the first place?
I DO NOT have to prove my pain and disease to anyone -
My "invisible" but very real, unimaginary illness exists. I feel pain 24/7. Some people do not (even try to) understand and have a distorted and disproportionate expectations.
2) We just want the support of the people dear to us.
People surviving with chronic illness face challenges that are inconceivable to normal and/or healthy people.
Often times, family and friends tend to make insensitive or thoughtless remarks or even requests that exhaustively impact our well-being.
Inspite of the awful unpredictable nature of autoimmune diseases, there are moments, hours, or even days of "low pain". Sometimes it lasts for a short period of time, sometimes not.
Personally, whenever I do not feel crackling pains, (chronic & extreme) fatigue, weakness and have all the limited energy (SPOONS) to move around and carry out chores, I DO THEM. I AM ABLE TO DO THEM.
To put it briefly, even through pain, I can carry out chores that I DEEM AM ABLE TO ACCOMPLISH. Otherwise, I will NOT carry through or postpone the tasks / activities.
In my experience, I do feel that I am a burden when it comes to contributing to house works and chores nowadays. I am not WHO and WHAT I used to be -- as much as I want to move I feel extremely guilty for not being able to do so. But I do remind myself that autoimmune in general cannot be prevented and there's only so much that I can do.
THAT IS WHY when I CAN, I DO.
4) Stop putting labels and words in our mouths:
When we are trying to help out and contribute, please do not be so insensitive as to say what we CAN and CANNOT do.
Believe us when we say we wen and DO NOT ASSUME THAT WE CANNOT.
Example: You see us washing the dishes then suddenly you would remark "You are not able to do that." YES WE CAN, WHEN WE CAN.
Yes we are disabled and each and every one of us have different diagnoses, symptoms, limitations -- but we continue to fight and make things work everyday. Chronically ill people are creative, smart, innovative, and are masters of life!
We are only disabled because of our illness and its complications which might prevent us to perform, live, and interact with the rest of the world in what's perceived to be in a normal way.
But please, we will appreciate it if we you can also give us the space to fully appreciate being ABLED.
Caveat: Please do not gaslight or get AGGRESSIVE and make degratory remarks or make your loved one feel guilty for not being able to perform normal tasks that may seem easy, fast, or normal to you.
In my case, I am able to cook, clean, and do chores but in a very, very slow and painful phase requiring rest every 5 minutes as I tend to be fantastically exhausted.
(Yes, 10 steps is exhausting enough for me. Legs crack up, lungs requiring deep breathes. But I STILL DO, I endure when I can.)
5) We appreciate all the emotional, physical, and financial support extended to us
Every single effort to help, support, and understand our condition is wholeheartedly appreciated!
Most importantly, especially to the family members, it would mean a lot if we can make an effort to really learn and work on knowing the specific autoimmune disease your loved ones have.
We are also trying to learn more about our disease everyday. Autoimmune is still a big mystery even to the medical community.
6) We DO NOT NEED unsolicited advise or opinions you heard online from herbal doctors or those who are "HEALED" or "CURED" of the disease
We do understand that a healthy and balanced diet is important but you also have to remember that:
+ Autoimmune diseases are incurable. It can only be managed.
+ Each patient / fighter are experiencing different symptoms. No TWO LUPUS patients' experiences and symptoms and treatments are the same.
+ There is no "GETTING BETTER." We do not enjoy the pain, but realistically, this only upsets us.
+ If there was one single herb and diet restrictions that works, all of us would have been cured, healed.
Nonetheless, we know your intentions mean well! :)
germansingergirl
gummygunk
jacobvanloon
yousharknotpass
tangentwithtanner
theartofmadeline
origamiaround
snowghoul
