Chronic Pain Do's / Dont's

After my last blog post, I wanted to come back with a bit more info describing the day to day of life with chronic pain or illness, as well as practical ways to help those around you who struggle. In my last post I talked about the chronic headaches and jaw pain I deal with and the hope in the struggle. What I didn’t mention in that post is that I also have endometriosis and enteric nerve dysfunction.

What does all that mean? It basically means that I look really healthy (and am healthy) but I typically don’t feel good. If my head/jaw isn’t hurting, then my stomach is typically bloating badly, and sometimes both at the same time. Certain foods set off my stomach (it seems like most foods these days, including coffee, gluten, dairy, most sugars except those naturally occurring in fruit, and even chocolate).

Most days when I wake up I already have a headache or a stomach ache with bloating and sometimes nausea too, and sometimes both. Too little sleep can set off my stomach worse, and too much talking can set of my jaw/head pain.

I haven’t always felt this way, the pain began in my stomach around 14 years old and has slowly worsened over time. The jaw pain started 22 months ago. So I know what it is like to feel better, and I am a problem solver who is working very hard to use diet, supplements, exercise, and some medications to help heal my body over time.

But what I really want to share here are some ways you can and cannot help those around you who suffer with chronic pain. If they are anything like me, they look super healthy, but often don’t feel very good. So, here are some do’s and don’t’s for ya!

Dont’s:

• Don’t tell people to just “stress less and you’ll feel better”. Although stress can trigger flare ups in people with chronic illness/pain, it is often the illness that causes the stress and not the other way around.

• Don’t tell people to become a vegan / vegetarian and it will magically fix all their health problems. (And don’t watch “What the Health” for that matter either!) I cannot eat beans, most grains, and some fruits and veggies too, so being vegan / vegetarian is NOT a healthy option for the health issues I deal with.

• Don’t tell people to just push through it and they will feel fine. Although sometimes that is the case, allow the person WITH the illness/pain to determine when they can push it and when they can’t.

Do’s

• Do meet people where they are at. I struggle with talking a lot because it causes more jaw pain. So, some of my friends will text or write emails to me to stay in touch. It helps me to feel “in the loop” even when I don’t feel well enough to hang out.

• Do try to create situations that meet people’s needs when possible. For example, wine sets off my stomach as does not eating on regular intervals. When friends invite us over for dinner I can’t come over while they are cooking and then drink wine for 1-2 hours while I wait for the food. It can start a flare up for me and make me too sick to eat the dinner they prepared. Make a plan with your friends ahead of time so they know all the little details ahead of time.

• Do listen to people when they say they have limitations. Realize that looking healthy does not equate to feeling good. If they tell you their limitations, respect them and work with them around it.

• Do be sensitive with how you share information about your life. I remember after having endometriosis surgery (endometriosis can lead to infertility), a friend shared with me she was planning to start getting pregnant soon. While I was so so happy for her (seriously!), it was hard to hear after just having surgery on my reproductive parts!

• Do realize people want to feel great and live a “normal” life! Work with them to help them still feel normal and have fun even inside their limitations.

I hope this can help you if you either struggle with chronic pain or know a loved one who struggles with it.

-Analisa