28/03/2024
Hot tip, if you get into a committed relationship with someone that has chronic health issues please please please understand that 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. I didn't ask for my body to fail.
My favorite quote from my doctor was, “it can’t really be that bad if you are still working and doing everything you do.“ I told him I didn’t know I had a choice. 🤷🏻♀️
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 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 responses, "Why did you get so fat?" “I have this great diet, if you just go out and exercised." "That once beautiful hair of yours now awful and it falls 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 with ignorant people. 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 don’t 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 but it will help me.
* I am not lazy, I take medication and it sometimes makes me sleepy.
* I am not angry but sometimes cranky with pain.
* I struggle daily with pain, mobility problems, fatigue, the criticism of my environment.
Most frustratingly, people look at me and say, "It can't be that bad; you look good."
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.
I AM LOOKING AT THOSE WHO TAKE TIME TO READ THIS POST TO THE END.
The following request is sent to the post:
Please, for me and in honor of someone who fights against:
- Moyamoya
- ALS
- Ankylosing Spondylitis
- Lupus
- MS
- POTS
- Dysautonomia
- Crohn’s Disease
- Ménière’s Disease
- Addisons Disease
- Hashimotos Disease
- Graves Disease
- FND
-CVS
- Depression
- Anxiety
- Autoimmune disease
- Sjogrens syndrome
- Polycystic o***y syndrome
- Kidney Disease
- Rheumatoid arthritis
- Chronic pain
- Endometriosis
- Migraines
- Multiple sclerosis
- Myasthenia gravis
- Pulmonary hypertension
- Epstein Barr syndrome
- Chronic fatigue syndrome
- Diabetes
- Fibromyalgia
- Raynaud and Scleroderma
- Neuralgia of the trigeminal
- Epilepsy
- Cancer
- Hypothyroidism
- Arachnoiditis
- NEAD
- Vasculitis
- Neuropathy
- Alpha 1 antitrypsin deficiency.
- Epilepsy
or some other disease you don't see.
I would like 5 of my friends to post (not share) this message to show that you are always there when that someone needs to talk.
In support of a friend, a family member and me who is fighting any of these diseases. Just say “done.” ❤️. Yes I am. For life now that found out. But it explained a lot more. Please pray my newest diagnosis is not as bad as they believe. This diseases are so scary. F**k PML.
Note:
Copied from my dear friend whom I love & have watched her go through hell since the day we met, Danielle Link, we may not share the same disease(s), illness(s), or condition(s)- but more than a few things on that list, apply to me... The post applies to me as well as her and many many others.
So I'll say it again, INVISIBLE DISEASES/ILLNESSES DO EXIST AND MOST OF US ARE CONSTANTLY SUFFERING ALONE IN SILENCE. Not to mention constantly being misdiagnosed, undiagnosed, diagnoses changed multiple times before actually being figured out, the years and dozens and dozens (or more) of tests and and hospitals. It's a living hell.
You never know what someone is going through just because they appear to be and/or say that they're "fine/ok"... We're just used to saying and pretending that we're "fine" because it's easier than explaining the list of awful s**t we feel that you can't see. So be kind, compassionate, and take the time to understand what's going on with someone especially someone you CARE about.
-end of rant. Also, you don't have to share the bottom 'Note:' part. If you made it this far, thank you for your time & for caring enough to read all of this🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡
