30 Day invisible illness challenge: day 23

Day Twenty Three: 

Want to know a secret? One thing people say that gets under my skin is: 

"It's in your head"

This is a tough question. There are a number of things that people say that drive me absolutely crackers. Some of the big ones include: 

1. My aunt's cousin's sister's friend had endometriosis and she's cured after trying this homeopathic herbal tea. 
2. Endometriosis isn't a big deal and it's easy to treat. 
3. Just get a hysterectomy. 
4. You just need to get more exercise. 
5.  You should try this doctor 

I understand that most of these suggestions aren't malicious and they're said because the person genuinely cares about me and wants me to feel better. But here's the thing: 

1. Good for your aunt's cousin's sister's friend.Wow. Amazing. She should write a book. Because there's no actual cure for endometriosis. 
2. Saying that endometriosis is no big deal and is easy to treat is a backhand slap across the face. It is a big deal because it's negatively impacted my life and I've been suffering for over 9 years. And it's not easy to treat- I've been on nearly every treatment, including a cancer treatment, and none have worked. 
3. I want to have children. And a hysterectomy isn't a guaranteed cure for the disease- it can still come back, even after the uterus and ovaries have been removed. 
4. Whenever I try to get exercise I'm reduced to a ball of tears and agony. Yoga literally provokes bleeding in my digestive tract-- I'm awaiting a colonoscopy thanks to a failed attempt at getting my abs back.
5. I hate switching doctors. I've been through so many, and in Canada, you get put on an enormous wait list and it takes months, even years, to see a specialist. I've swapped doctors so many times, I've had my files and referrals lost so many times.... unless this new doctor is Jesus himself I'm not interested in waiting over 6 months to see him.

But the biggest one, the holy grail of all the unsolicited opinion that I have received, is: 

It's in your head / it's a mental projection / an attitude change will heal you

I have, on so many occasions, truly believed that this disease is indeed in my head and I am actually making this whole thing up. I've bawled my eyes out in front of my specialist, crying about how I'm crazy and I've imagined this pain and it's ruining my life (he prescribed sedatives after that visit, actually. FML).

But here's the thing. 

When you tell a sick person (whether it be cancer, endometriosis, lupus, whatever) that if they change their attitude or that their pain is in their head, you are severely hurting them. And here's why: you're putting the blame on that person. 

You would never tell a person with a broken leg that by changing their attitude they will heal themselves. That's ludicrous! Yes, a positive attitude helps lift one's spirits, but it won't heal their broken leg. It's no different with an invisible illness. When you say that an attitude change will heal my disease, you are inherently saying that my current mental state is causing my suffering. This is an enormous burden. I'm already suffering with pain on a daily basis, and I miss feeling healthy and active. I am optimistic about my future, but I am also realistic about it. I know that I have an aggressive case of endometriosis. It has already grown back and spread with a vengeance after being removed in surgery. 

When you have a broken leg, you see a doctor and get a cast and you heal. When you have endometriosis, you see a doctor, have surgery, and in a year the disease comes back. 

That's the reality of it.

Yes, I believe that diet changes, physical activity, and positive thinking and emotional wellbeing contribute to a happy and healthy life. It does positively impact your body and helps you heal. However, positive thinking and a healthy outlook won't cure the disease. 

After a close loved one suggested to me that an attitude change would cure my illness, I made an appointment with my specialist. I was particularly disgruntled, as I had taken this advice to heart and I became convinced that it was my fault that I was ill. My doctor, this gruff, grey, mustached fellow, listened to what I had to say and dryly he replied "well kid, that's a tall order to fill." He explained to me that for an unknown reason, endometrial tissue was displaced in my pelvis. I experience severe inflammation, internal bleeding, and the binding of internal organs. A co-morbid condition causes tight muscles and constantly firing nerves. This is why I'm in pain. Yes, he agreed, that stress can worsen pain, so stress reduction and emotional health are important in pain management. What I can't do, unfortunately, is heal myself with a jolly attitude and a pleasant outlook on life.

I understand that I'm not doing anyone any good when I'm in one of these moods:

When my aches and pains have aches and pains, this is me.

It really gets to me when it's suggested that my pain is something that I'm imagining. I seriously wish to use a baseball bat to smack this person around a bit and then boldly and ignorantly inform them that the pain they're feeling is in their head. But, apparently, causing bodily harm to another individual is illegal, so I can't really do that...

I actually had a doctor tell me that my pain was made up. He was very old, and very arrogant, and he told me that my pain was a mental projection. He said that at 18, I was too young to have any gynecological problems. I actually believed this for a while, and I was convinced that I was crazy.

Then I was diagnosed with this.