4 Ways to Take Back Control of Your Life With Chronic Pain

One of the struggles of having an invisible disease is the fact that it is invisible.

I have endometriosis, I have had it for 16 going on 17 years and I am not yet 30!

It took eight painful years for the diagnosis to happen. For eight years I was told there was nothing wrong with me. I was told I was lying and that the pain was in my head.

Speaking boldly about my experience with endometriosis is still a challenge. Nine surgeries later, I still find it hard to express how much pain I’m in.

 

This year I decided to take back control where I can. It has been a difficult mental and emotional battle.

Here is what I have learned:

1. You have to be your own ambassador.

I have fired a couple of doctors, I have lost friends, lost a couple of opportunities and through all of that I have learned I am the only one who truly knows my pain. I have to fight for me.

When I need to go into the ER for pain relief, I have learned to go with the facts: “No, I am not just seeking drugs. I have stage 4 endometriosis that has been diagnosed and treated through nine laparoscopies and two hysteroscopies. I am here to get pethidine/morphine/fentanyl, and I will need an anti-nausea IV too.” End of story.

When I start a new job, I let the HR department and my boss know about my condition: “Two or three days a month I will be physically unwell and I cannot come in. I will, however, work as best as I can during the better days.” End of story

When I met my husband, I let him know about my condition and how much it affects me.

Sometimes, the voices creep in, and I have to keep fighting them with affirmations: “The pain is real,” “You will not die, you will survive this.” I also use scripture to get me through the self-defeating thoughts.

2. It’s OK to rest.

This one is hard. I don’t usually think I need to rest until my body crashes and I can barely get out of bed.

Feeling guilty is a chronic pain in itself! Guilt creeps in when I have to stay in bed all day when my colleagues are at work or when I miss another party/gathering.

Sometimes I sit with the guilt for days and it turns into resentment and self-loathing.

I’m learning I have to let go of what I can’t handle. It is OK to have the dishes pile up, it’s OK to see pictures on Facebook of another hangout I missed.

I have learned to embrace JOMO – the joy of missing out.

3. Stop apologizing for being in pain.

I still catch myself apologizing for being ill. I did nothing to have endometriosis, I did not make a decision to have pain. So stop it.

No is a brilliant word to use. It’s so easy – it rolls off the tongue without any issue. When I try to get away from saying “no,” I end up giving excuses and apologizing. It’s so frustrating!

Saying no grows on you though… Try it sometime.

4. Have a support system.

Having a close knit group of friends or family is important. People who understand that you do not need pity or an apology.

My people get that I live on a limited amount of spoons a day, they are there when I need to be rushed into the ER at 2 a.m., they let me cry when I need to cry or call me out when I get into the deep hole with self-defeating thoughts.

If you don’t have a physical support system, consider finding one online. There are so many forums and support groups. Just don’t struggle alone.

This pain is not in your head.

This pain is not normal – but you will survive this.

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Thinkstock photo via vectortatu.