Silent Suffering

What to me is silent suffering? Or "invisible" diseases?

When a person has a certain type of autoimmune disease like lupus. (and I know there are a LOT of types of autoimmune diseases)

Last fall I was diagnosed with Lupus.

Lupus: A chronic inflammatory condition caused by an autoimmune disease. An autoimmune disease occurs when the body's tissues are attacked by its own immune system. Patients with lupus have unusual antibodies in their blood that are targeted against their own body tissues.

For years I've suffered with symptoms that have been painful for me. Unknown rashes (i still suffer from), hair loss (which i suffer from big time....even lately people have commented on my hair loss), and very painful joints. I also get very fatigued at weird times.

I would say that it dates back to my Ottawa University days, when I was 19 years of age. I used to get over the nose and cheek bones rashes and I never really knew why.

Over the years, as many friends and family members know, I haven't felt the greatest. And the reason for me to write this entry is to show people that just because you "can't see" pain, it doesn't mean that it's IN OUR HEAD. (no this isn't geared to anyone in particular, it's a general statement for everyone who judges people that think we fake not feeling well, and even though we may not LOOK sick, it doesn't mean we're not suffering)

I don't know how many times in my life I've been told that it's all in my head. That I can't be as sick as i claim to be. I'm sorry but until you can become me (and that won't ever happen) you shouldn't judge how I, Rachelle Petitclerc feels. (yeah yeah I know I'm being dramatic here) I've also been told so many times "what? Your sick? AGAIN? Your always sick". If it was my choice I would NEVER be sick. I didn't choose to be sick. I was born this way I guess.

I've been told "well you have a beautiful, supportive family so be thankful for what you've got. A lot of people wishes they had what you've got.". OK, i do have the perfect family. And I'm thankful daily that I was able to have a beautiful family with Jason. I have a wonderful husband who truly is my best friend. He supports me on ANYTHING and EVERYTHING I've been through. But that doesn't change that I'm ill, and that I often don't feel well, or I'm fatigued and unable to do certain things.

I get days that my joints hurt to much that it's hard for me to even walk because my toes hurt so bad. I don't always talk about it with people because I'm sure people get tired of hearing about my "bobos".  Jason is someone who doesn't get annoyed of me and really does listen to me. As I do to him. When you truly love someone you don't judge and you accept that person full heartedly.

A few days ago someone commented on my thin hair. They said "wow you have such thin hair on the top of your head". I have been told that so many times that i can't count that high. The only way I could get more hair is to be on birth control pill. Last summer I started taking it. My hair started to grow back so beautifully and so much more thicker. But there was a cost to that. And that was the cost of a possible stroke.

Once I started the birth control pill, i developed aura migraines. And that poses a huge risk. Being on birth control pill and aura migraines raises the chances of having a stroke. So i had a choice. Stay on birth control, and have beautiful hair with the possibility of a stroke OR get off birth control and lose may hair. And really there is only one answer. GET OFF THE PILL. I can live with no hair, but having a stroke isn't something I would like to deal with. (duh).

I do have a double whammy against me when it comes to my hair loss. I have PCOS (polycystic ovarian syndrome) and that is a huge cause for hair loss. So add lupus AND PCOS and I'm kinda screwed in my hair department.

My hair and skin DR suggested getting a hair transplant in Toronto. But if I did go through with it chances are I'd still lose my hair. My health issues where my hair is concerned aren't going to go away, therefor I'd be wasting my money on a hair transplant.

The reason I wanted to write this entry isn't to get pity. It is to help people understand that just because things aren't necessarily seen, our pain isn't in our heads. We suffer just as much. And it's not always physically. Hair loss isn't fun for anyone, especially a woman who's still young (ish) and in her prime ( lol, i know that was funny eh? In my prime LOL)

It took me years to figure out why I've been so sick in my life. And I'm never going to be out of the woods with pain. But support is all I look for. Don't question me when I say I'm not feeling well because i promise I'm not lying.