Endometriosis can be a lonely journey

Today I went to my third conference in a week. These conferences are great opportunities to meet new people and make networks and connections – except everyone stands around to chat. Ordinarily, this isn’t an issue, but when it takes every ounce of energy, mental and physical to do so, it’s hard. So, I sit along outskirts of the room, watching everyone mingle, just wishing I had the energy to do the same.

Conditions like endometriosis are invisible; it’s not like a broken leg, where you have a cast. There is no physical feature that you can identify, maybe except a hunched back or hobble. (But I am so thankful for the two lovely girls who went out of their way to chat to me, it was a real blessing. But they left.)

This is one example of the social isolation I regularly encounter. Often, I can’t go for a walk in the park or on the beach and when I do go out socially, I fall behind the group – I can’t keep up. Sometimes pain-killers limit one’s ability to drive and get around too. However, the bottom line is, like with all chronic pain, I am tired all the time. By the time I work and try to fulfil my domestic obligations, I need to sit or sleep.

It gets very lonely and it can be easy to feel isolated. No one seems to understand what you’re going through – they want to, but they don’t. It’s not just the pain, but the seemingly hopelessness of it all. There is some research on the condition, but there is still no identifiable “cause” or “cure”. The reality is, a woman may be stuck with Endo until menopause or have a hysterectomy – how can anyone else understand that?

For those who don’t have Endo, we who do need support and friendship. We need fun, excitement and distraction. If you know someone with endometriosis, or any chronic pain, I plea with you – make the extra effort to spend time with, listen to and cry with them. Because, most of the time, they need and desire it, but don’t know how to ask for and pursue it. Being healthy and having energy is a blessing, so use it to support those who don’t.

For those who do have Endo, be open with your experience (appropriately of course), because there are millions of other women suffering through it too. As isolating as chronic pain feels, the reality is, we aren’t alone.

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