Casual

Living with the pain

Good Afternoon Loves!

I was doing some reading online about adenomyosis once again, but it keeps linking to endometriosis, however I found a helpful link, if anyone was interested – source

Family, friends and compassion fatigue

Knowing what to share and not share

When you’re first diagnosed, a very wide range of people will show some obvious concern for you leading up to diagnosis. As time goes on though and years pass, many people expect improvement, for you to get better, and for the pain to have gone away.

So our struggle with endometriosis isn’t just a lack of awareness of this disease, but a wider lack of appreciation about chronic illness.

To some people around you, you’ll inadvertently become a reminder of illness and mortality no matter what you do. Generally speaking, people don’t like to dwell on these topics, so it becomes uncomfortable listening for them.

“There are many terrible things about illness; the lack of empathy hurts the most.”
– Havi Carel

So talking about endometriosis becomes a careful balancing act. Establishing how much to share with the people around you, based on a number of factors:

  • How well they know you
  • How comfortable you are talking to them about it
  • How honest you can be about how you’re feeling
  • How uncomfortable they’re likely to get if you share too much
  • How much pain you’re in

There are no easy answers with this issue, but in time you start to get a better understanding of who can and will listen to whatever you want to share, and people who very much suffer with their own sort of compassion fatigue.

Taking about it too much?

Endometriosis has a way of making you realize who your real friends are. Regardless of how positive we can be, realistically it has become a part of our lives, shaping our identity. Endometriosis bleeds into every part of our lives. How easily we can work, how easily we form and maintain relationships and how we think and act. It effects everything.

Some days it’s impossible not to talk about. We do everything we can to ignore it and feign a level of normality. So most of the time endometriosis has a way of making me more candid. Life (and by proxy) time has become too precious. Some people may complain about hearing about it too much, but on these days I remind myself we do not get a break from this illness, so on those days only my patience saves anyone else from my burden.

The hardest moments of sharing

The trickiest moment is when someone asks us how you are. In time again, you come to know who asks you unconditionally (who genuinely wants to know) and those who only asks to ease into conversation, judge your response carefully. If in doubt, share a brief detail and move on quickly. I rattle out “I can’t complain” constantly, it’s ambiguous enough for someone to take the meaning they want away from the conversation without an outright lie.

It does remain hard to stay quiet sometimes. Impossibly hard. All around you there are healthy, capable people complaining about flippant aspects of their life, problems you wished you could shoulder rather than the ones you had.

On those days I urge you to try think back and remember a time before endometriosis. When you went through life without baggage or worries, you simply were. It’s no ones fault that we have this illness, while shouldn’t wish illness upon anyone – take comfort from the fact that in time everyone around you will understand and empathise more.

This will happen partly through you raising awareness of endometriosis and other chronic illnesses, but also because of the fallibility and frailty of the human body. At the start of life we feel invincible, and as we grow older we become more aware of our limitations. As endometriosis sufferers we have a wisdom far beyond our years.

In time, others will realise that this isn’t something that will necessarily get better, and they will change their focus from trying to make you well to just supporting you unconditionally. These people are the people to hold onto for dear life.

Because illness is a part of life, as natural as living, breathing or dying. It’s something we all face at different points in life, for different stretches, as such we shouldn’t be ashamed of talking about it.

I thought this was something it should be shared, world wide. I know there are so many people around me that does not understand, I know my husband looks at me, and he feels bad that I am in pain, when I try to explain my pain I get “I feel you, I am getting my period too, it sucks” I do not know how many times I felt that I was so unheard! I wanted to throw my phone, I held in my rage more and more I got tired of hearing about other people’s complains, its like be THANKFUL for living your life, I cant live mine! that is the feeling I would have – lately I have been so distance from my friends, they just do not get it. I don’t think they ever will, nor do they want to. I end up asking about them, and show them how well I care for their well being. The more I try to talk about it, the more I feel like they get annoyed with it. Then we go weeks without talking. There are a few people who are willing to listen to me, they care about my well being. It comes to the point at work that I just want to hide – I get “at least you do not have to worry about losing your job over…” I would look at my co-worker and say “I have been missing SO much work, I am worried” it was just pushed aside, people at work SEES me in pain, I cannot hide it anymore, I try so hard, I gave up, It took over me. I am still waiting for a surgery.

I lost friends when I moved out of my moms house into with my boyfriend (who is husband now), I lost more when I got married, Lost more when I got a full time job, Lost even more after having John, and now I am slowly losing more, I do not have alot of friends, while I am a social butterfly (not these days) I know I am losing them to this disease – they will move on.

This blog is a mood downer, but I am putting my feelings on this, I feel like I am so done fighting, I have been battling this for over a year. I just want to cry and hide. I do not know what to do these days. I wish I knew.

Have a good evening, be grateful for everything you have, I know I am even how depressed & hurt I am, I still am grateful even when I cannot carry my son anymore – hes my whole world.

❤ Amber

 

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