19/02/2026
If you ever get into a committed relationship with someone that has chronic health issues, please please please understand this, that person may not be able to do anything for themselves for weeks to months at a time and a large burden is going to fall on you. Take the time to make sure you're able to handle it before you commit.
My favorite quote from my doctor was, āit canāt really be that bad if you are still working and doing everything you do."
I told him, I didnāt know I had a choice. š¤·š»āāļø
Years in pain, tired and the many changes in me for no reason or apparent reason ... Hiding everything from someone else, pretending to be doing better than you are; until it no longer works. No matter how strong you want to be.
Then the moment comes when they tell you what you have ... You have mixed feelings: you might finally know what you have, but how do you deal with it?
Lack of encouragement, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand.
Then, the daily responsesā¦ "How did you get so fat/skinny?"
āI have this great diet you can try, if you just go out and exercise."
That once beautiful hair of yours now thinning and falling out...
What happened to you??....
This is all true and that's why I'm sharing it.
Silent and invisible diseases do exist ...
When you have an invisible disease it is difficult to argue from your perspective.
Life takes a lot of turns !!!
Tired of being told:
* Did you go to the doctor?
* Have you tried this?
* Have you tried that?
* I donāt know what else we can do for you...
Yes! I tried and still try everything !!!
Doctors say this disease is forever. That I will not heal. However, I am not giving up, but I want to make others realize:
* A nap will not cure me.
* I am not lazy, I take medication and it sometimes makes me sleepy.
* I am not angry, but sometimes cranky in pain.
* I struggle daily with discomfort, mobility problems, fatigue, and the criticism of my environment.
Most frustratingly, people look at me and say, "It can't be that bad; you look good!"ā¦ its amazing what good skin care can do for your appearanceā¦. Your physical appearance rarely matches how you are feeling.
Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good, it is an "invisible" disease.
This disease affects me physically, mentally and emotionally. Because rare autoimmune diseases cannot be seen, but we feel them.
And they are there ... Silent attack but extra painful.
When friends move on without you because you often have to turn down offers of socialising, please know that inside, we are screaming that we want to say yes, but we are scared thinking we may fall ill and ruin your dayā¦.. orā¦ the possible after effects, we question ourselves as to whether we can cope with the added pain, fatigue, emotionsā¦ We still want to be asked despite the many noās that were previously given. It makes us feel loved and not forgotten as crazy as that sounds.
Sometimes just come and sit at the end of the bed and chatā¦. That is the best kind of socialising anyway. For us with chronic illnesses, it gives us life and changes the rest of our day for the better.
I AM LOOKING AT THOSE WHO TAKE TIME TO READ THIS POST TO THE END.
Please, in honor of someone like me who fights against:
-Postural Orthostatic tachycardia syndrome
-Lupus
-Crohnās Disease
-MĆ©niĆØreās Disease
-Addisons Disease
-Hashimotos Disease
-Graves Disease
-FND
-Gastroperesis
-Depression
-Anxiety
-Autoimmune diseases
-Polymyalgia rheumatica
-Sjogrens syndrome
-Polycystic o***y syndrome
-Rheumatoid arthritis
-Chronic pain
-Endometriosis
-Multiple sclerosis
-Myasthenia gravis
-Pulmonary hypertension
-Chronic fatigue syndrome
-Myalgic Encephalitis
-Diabetes
-Fibromyalgia
-Degenerative Disk Disease
-Raynaud and Scleroderma
-Trigeminal Neuralgia
-Epilepsy
-Cancer
-Hypothyroidism
-Arachnoiditis
-NEAD
-Vasculitis
-Alpha 1 Antitrypsin Deficiency
And some other diseases you can't see.
COPY AND PASTE:
This messageā¦. I and everyone like me thanks you for your support.
In support of a friend, a family member who is fighting for this disease.
Just say ādoneāā¤ļø
