I deleted myself off a Crohn’s Facebook group earlier this week. As much as it was somewhat useful when I was diagnosed, I got really tired of the one-upmanship going on about who was suffering more than who. And while I do truly appreciate the bolshiness of people who post pictures of their recent surgery scars and ostomy bags on social media, I really don’t care for loads of those photos showing up in my News Feed. As someone who grew up with a parent who has an ostomy, I am in no way freaked out about them, I just really don’t care to look at them when the insomnia has set in at 4am.
I’ve had this experience with some Endo women as well. Most Endo women are absolutely brilliant and would never play the “one-up” game, but you do get a few who do. The reality is that we are all trying to cope, and some people are really struggling to do so, but we are all in the same boat and it serves no purpose trying to “one-up” each other. I know that some people have really big struggles with being taken seriously, especially with “invisible illnesses” like Endo, so they feel that they need to make everything really big to be heard. But seriously, I get it. You don’t need to do the “one-up” to prove to me that you are unwell. I already believe you.
One of the challenges with this “one-up” issue is that, like it or not, is that there is a hierarchy of illness, both in the medical community and in the wider community. By this I mean that certain illnesses get more “respect” than others. The number of charities for cancer are a good example of this. Not that I am in anyway diminishing the significance of cancer, I lost a very good friend to cancer two days ago. But as an example of this, she had ovarian cancer, which doesn’t get the funding or press attention of breast cancer. And because ovarian cancer tends to present with very vague symptoms (abdominal pain, severe bloating, being unable to get much food down - my, this sounds familiar!) and primarily affects post-menopausal women, it is often ignored until it is too late.
Inflammatory Bowel Disease, which includes Crohn’s and Ulcerative Colitis, doesn’t get a lot of attention because, well, they involve the uncomfortable subject of poop, and people really don’t like talking about bowels.
Illnesses that affect more women than men tend to fall further down this hierarchy and have loads more stigma attached to them. Fibromyalgia is a really good example of this. There is a particular camp of doctors who view the diagnosis as “fakers-myalgia”. The fact that it affects so many people (men included, by the way!) and the pain and fatigue for people who have it is very very real, doesn’t seem to matter to that part of the medical community. And unfortunately, a lot of that part of the medical community seems to work in rheumatology, where Fibromyalgia patients are often referred. Sigh. There was a really good episode on the CBC radio series “White Coat, Black Art” a few years back. It is well worth a listen. - http://www.cbc.ca/player/Radio/White+Coat+Black+Art/Full+Episodes/2011/ID/2170992213/
And despite the additional attention being given to mental health recently (in Canada, anyway), mental health is truly and utterly at the very bottom of this hierarchy.
This whole post really came about because I wanted to post a link to something written on one of my favourite blogs. The Mind Your Body blog is written by an American hospital psychologist who counsels people with chronic illness and much of the blog explores the connections between mental health and physical illness. It’s brilliant. One of the main authors wrote a very beautifully written rant on this subject this week, I encourage everyone to read it - http://opbmed.blogspot.co.uk/2014/05/chronic-illness-isnt-competition.html
I’ve had this experience with some Endo women as well. Most Endo women are absolutely brilliant and would never play the “one-up” game, but you do get a few who do. The reality is that we are all trying to cope, and some people are really struggling to do so, but we are all in the same boat and it serves no purpose trying to “one-up” each other. I know that some people have really big struggles with being taken seriously, especially with “invisible illnesses” like Endo, so they feel that they need to make everything really big to be heard. But seriously, I get it. You don’t need to do the “one-up” to prove to me that you are unwell. I already believe you.
One of the challenges with this “one-up” issue is that, like it or not, is that there is a hierarchy of illness, both in the medical community and in the wider community. By this I mean that certain illnesses get more “respect” than others. The number of charities for cancer are a good example of this. Not that I am in anyway diminishing the significance of cancer, I lost a very good friend to cancer two days ago. But as an example of this, she had ovarian cancer, which doesn’t get the funding or press attention of breast cancer. And because ovarian cancer tends to present with very vague symptoms (abdominal pain, severe bloating, being unable to get much food down - my, this sounds familiar!) and primarily affects post-menopausal women, it is often ignored until it is too late.
Inflammatory Bowel Disease, which includes Crohn’s and Ulcerative Colitis, doesn’t get a lot of attention because, well, they involve the uncomfortable subject of poop, and people really don’t like talking about bowels.
And despite the additional attention being given to mental health recently (in Canada, anyway), mental health is truly and utterly at the very bottom of this hierarchy.
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