Why can't you?

[dimarzio]

Anyone else fed up with people saying "why can't you do this?" and "why can't you do that"?  It seems that nobody understands what this disease does to your connective tissue.

 

They can't understand why I can do things some days but not others and why I can sometimes endure the pain, fatigue cramping, etc. carrying our basic functions and sometimes it gets too much.

 

I'm simply fed up with people saying "why can't you?", thinking that Scleroderma is nothing more than a skin condition or just can't be bothered to even understand what this disease entails.

 

I know someone with rheumatoid arthritis (RA) who gets so much sympathy and understanding, yet those same people think that all of my symptoms are just made up.

 

Most common illnesses are well understood, but this one gets no sympathy or understanding from anyone, including the medical profession.

 

I've pointed quite a few of my friends and family towards this site and a number of other resources, yet none of them can be bothered to read anything or even watch a couple of videos.

 

It's like Scleroderma is invisible or irrelevant and attitudes can be very frustrating and even distressing at times.

[Joelf]

Hi Dimarzio,

 

That's the trouble with having a bizarre disease, of which no one else has ever heard!!

 

When I was first diagnosed, my friends were quite intrigued. However, they very soon became bored, especially as I insisted in regaling them with every minute detail of my symptoms and treatment and I quickly realised that unless I wished to commit social suicide, I had better find another subject of conversation when I spoke to them. Nowadays, if anyone is rash enough to ask me how I'm feeling , I usually reply "Well, I'm still alive!" accompanied by a small smile, to show that I'm joking and in case they don't appreciate my dry wit.

 

Sometimes, I've found that when I explain it's a disease that affects my immune system, causing it to attack healthy tissue such as my lungs, then I have had people understand a little and like many scleroderma sufferers, from the outside I look disgustingly healthy, so it is hard for the average person to understand how ill it can make me (and other sufferers ) feel.

 

I don't tend to worry too much about what other people think and make the best of it that I can.