Our Invisible diseases

[Judie P]

This is long, but it was sent to me as a support post from my husband's cousin, Anjie.  Thank you Anjie, and everyone else who supports us in our time of need.

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 the 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:
-Lyme Disease
-Crohn's Disease
-Hashimotos Disease
-Graves Disease
-Depression
-Anxiety
-Autoimmune disease
-Sjogrens syndrome
-Polycystic ovary syndrome.
-Rheumatoid arthritis.
-Chronic pain
-Endometriosis.
-Migraine.
-Multiple sclerosis.
-Myasthenia gravis.
-Pulmonary hypertension.
-Chronic fatigue syndrome.
-Diabetes
-Fibromyalgia.
-Raynaud and Scleroderma.
-Lupus.
-Neuralgia of the trigeminal
-Epilepsy
-MS
-Cancer
-Hyperthyroidism
-Arachnoiditis
-pulmonary edema
-endocarditis
-Psoriatic Arthritis???
-Fused spinal disks
-Interstitial cystitis
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 who is fighting for this disease.  Just say "done"

[Joe S.]

Thank you for posting this.

[Judie P]

Your welcome, Joe S.  I have always loved your posts.  It helped me a lot when I first got diagnosed.  I am sorry that you are going through your health issues.  I will be having cervical surgery on December 15 for arthritis buildup crushing my spinal cord in my neck.  I will permanently lose 70% of my neck mobility after the screws and two rods are put in.  But, we keep going on.  Take care.

[Deb 27]

Well said Judie! People need to learn how to just listen more than they talk and not immediately judge people. Also, if people don't volunteer information, don't ask!!!!

Best of luck with the surgery on your neck!

[Duchess]

Judie, I totally empathize with you and all others. Another thing, just because you saw me do something one day re: lift something, shop and bag my own groceries, yard work, etc. doesn't mean I can do it the next day or for the rest of the week for that matter!

Done!

Duchess

[meirish]

Frustrating as can be to have to put up with all the remarks, but I have learned to sort of put up with people. The bottom line is I don't want or need sympathy but I do request that you understand that I have health issues that come and go and that affect how I feel and what I can physically do on any given day.

Hate to say it but there are some people who seem to act like they enjoy picking on a person who has health issues. Do it once, I forgive, do it twice I sort of ignore or bypass you the next time. It really depends on the person. Those people we don't need in our lives. Some people like to cause "issues" so they can talk about things to others and some people are sort of slow picking up and understanding information.

Unfortunately, this leaves the hard work to us and we don't always have the endurance to persevere conversation or friendship on some days. Ain't worth the effort sometimes. Don't feel guilty. One thing, it does help to have other supportive friends and a supportive spouse or significant other. Good luck all. meirish

[MirkeshCat]

Right on the mark.

[meirish]

Welcome to a member from Germany. I have been on this forum for at least 14-15 years and I don't ever remember someone from Germany. Hope you are able to do searches that give you information that you may need. There are a ton of subjects, opinions, treatments used, complaints about doctors, etc and it all helps us learn plus helps us vent with understanding people. Come back when you can.  Good luck. meirish