So what happens now?

Hi all,

Firstly a huge thanks to everyone who sent me lovely messages after my post last week. I received so much love from friends and family and strangers alike. What lovely folk you all are! So many people I’ve seen this week have asked how I am and they genuinely mean it, it’s not just a greeting. Also, some people mentioned they had no idea how bad endometriosis can be so I’m glad to enlighten them. Spread the word people. It’s one of many ‘invisible illnesses’ that greatly impact people’s lives. Although I have to say I don’t like the term ‘invisible illness’. I think we all just need to look harder at the smiles that are warn like masks and start to see these illnesses which are so widespread you’ll see many people today who have them.

A comment on my Facebook page left this article. It is a very enlightening read concerning the male bias on medical research and teachings, even today. One quote from a medical professional that I couldn’t quite believe I was reading was “Do mad people get endo or does endo make you mad? It’s probably a bit of both.” Um, excuse me?! What drives us mad is not being taken seriously. Is people making out that our pain is all in our head and that everything has been done for us so we shouldn’t complain and waste their time. Another little gem was “I haven’t met a fibromyalgia patient who wasn’t batshit crazy.” They’re crazy, doc, because you dismiss them so readily because they’re pain isn’t seen on a scan or blood work. They’re crazy because they’ve had this same conversation with twenty other drs who have all dismissed them because pain is, unfortunately, invisible. If it looked like this: 

Or this:

I’m not sure you’d let us walk out of your clinic quite so easily. But this is how it feels, every day. This is pain we fight through to get our children to school, to go to work, to even get out of bed and make a cup of tea, we fight every single day. We put our brave faces on to see you, doc, and when they slip and the tears fall we are then dismissed as hysterical and unstable.

Another thing that is greatly misunderstood is the affect this has on the people around us. The only question I’ve ever been asked about my home life by a specialist was about my childcare arrangements. He was worried about our appointment running over into school pickup time. Once again it was about being someone’s mother and not my health. I wasn’t asked how I feel about it and if I can cope. I have a never been asked if I would like to be able to hold down a job which seems a physical impossibility most days. I’ve never been asked about my quality of life. My children often ask me if I’m going to die. I reiterate that I’m in pain but in no danger of death. Very rarely has endometriosis caused death and that is when it’s extremely severe and has spread to the lungs, eyes and even brain. Then it is still rare for death to occur. Although, a lot of the deaths I’ve heard about from endo are actually suicide because these women have been dismissed so often and been told that there is nothing they can do. If they don’t have the support network they feel isolated and unloved. Yes, being surrounded by love helps, but all the love in the world (and I get a lot of love every single day) doesn’t stop me being in pain. I see the affect in my husband’s eyes as he feels useless. I know many men who would be just as outraged by this treatment of women as I and many other women are. I see the look of concern on my new friends faces as they see my legs turn to jelly due to a massive surge of pain. I see it affecting everyone and yet the doctors often remain cold and I’ve searched for treatment in three different countries now. 

I must, however, defend those in the medical profession who have kept me sane. During the last 20 years of fighting this disease I have had two GPs that have really cared and one gynaecologist that was lovely (even though he misdiagnosed me!). The GPs saw my state of mind and knew a great deal of it was brought about by the depression relating to my disease and its not being treated and my quality of life. They were desperate to help me and disappointed in the specialists they had referred me to. They were frustrated that they couldn’t help me find the answer I so desperately sought. Also, it’s not just men in the medical profession. The gynaecologist who told me endometriosis was my condition was a woman. Let me paint the scene for you:

I was lying in my hospital bed recovering from the general anaesthetic I had just had whilst my laparoscopy was performed. Now a laparoscopy is an exploratory operation and the only thing that can clearly diagnose endo. She came up to me seeming harried and annoyed. “You’ve got endometriosis but it isn’t very severe and shouldn’t be causing the amount of pain you’re in. I’m going to write to your GP and recommend you see another specialist for the digestive organs.” And she was gone. No “how are you feeling?” Or “we can help you with this” . When I got home I ran an internet search for endo and the first thing I discovered was that the severity of pain isn’t linked to the severity of your condition. So you can be riddled with the endometrial growths and have no symptoms whatsoever or it can be fairly mild but you have severe pain. 

It seems to be that, to make up for their own inadequacies, the drs in question need a scapegoat and that is us. They can’t treat us because our main symptom is pain and therefore we are passed along to the next person because pain is all in the head. Isn’t it? Then we’re given medications to help alleviate that pain and they make us gain weight. At our next checkup we’re told the weight gain won’t help us so to loose that weight. And so the vicious circle continues.

So what happens now? We carry on. We get up because we have to. We take our meds and put on our brave faces for the day. Take our kids to school and make a cup of coffee. We sing because it keeps us happy even thought it takes a toll on the body. We become engaged in activities we love so this disease doesn’t win. We change our diets. We make sacrifices. We fight and struggle to keep our minds healthy and happy even if we can’t stop our bodies from hurting. And this is not just those of us with endo. This is every invisible disease from fibromyalgia to chronic fatigue syndrome, from lupus to depression. We may look fine as we take the priority seat on the subway but our legs are searing with pain. We get stared at as if we have no right to sit there. And can I get a badge that says I have a right to a priority seat? No, because my condition isn’t severe enough. But I stand and grip that handrail so I don’t fall over. I carry on because I’m given no other choice. Us spoonies (those with chronic illnesses) have to carry on or give up.

My question is: is it endo that makes you mad? Or the lack of understanding within the medical profession and those that are supposed to help you?

I leave you with another quote:

“Those [diseases] affecting mainly women remain largely a mystery, understudied, under treated and frequently misdiagnosed or undiagnosed. This has major knock-on effects for both medical practice and the health of women.”