7 Things People Need to Understand About Chronic Pain

I wish I could make everyone read up on invisible illnesses. It breaks my heart whenever I see people being emotionally abused on social media for parking in a disabled space, using a wheelchair although they can technically walk or sitting on public transport and not giving up their seat.

These people didn’t ask to be ill, and they didn’t ask for invisible symptoms so people wouldn’t believe they’re hurting or need help.

This is what I want people to understand about my condition, Ehlers-Danlos syndrome, and the chronic pain associated with it:

1. Understand we can be “OK” one day and unable to move the next.

I’ve lost people in my life who couldn’t believe that I can spend a day shopping one day and then I can’t get out the bath the next.

2. Understand we know we don’t look sick all the time.

We know we may look fine, but it’s called an invisible illness for a reason! Sometimes I cry myself to sleep wishing I looked how I felt so people would leave me alone and stop asking so much from me. Instead of telling us we look well, please ask us how we are inside — it will mean a lot.

3. Understand you don’t need to tell us that someone has it worse.

You might think this is a useful thing to say, but we already know some people have it worse. Chances are, whoever you told this to has thought about it a million times before. And knowing someone may be worse off doesn’t cure the pain.

4. Understand that we realize we’re too young for this.

Telling us we are acting like an older person or saying we should be living life more unfortunately doesn’t help. It’s upsetting and reminds us what our lives could be like if we weren’t ill. I know I’m too young for a limp and dropping cups of tea that are too heavy for me. It’s not something you need to point out.

5. Understand we may have mood swings.

This is a big one! A lot of people tell me I have crazy mood swings. I’ll call someone to stop by for giggles, girly movies and wine, but when they come round, I’m sobbing. I can also be emotionless, sit and stare for hours and barely interact. It’s really hard to be in pain, and it does take a toll on you emotionally.

6. Understand we don’t need you to offer us cures and “fixes.”

See my previous post! I’ve been offered so many suggestions on how to “fix” me. I have an incurable condition so unfortunately suggestions like exercise will not fix me.

7. Understand we don’t want to ask for help all the time.

Sometimes I’ll feel fine, and sometimes I won’t (see point #1). If I ask for help carrying my bag or ask to lean on you while walking, please know I don’t want to have to ask. It’s upsetting enough to be dependent on others without being questioned. “You carried your own bag yesterday” or “You walked in heels last week, so how can you not walk in trainers today.” I do rely on people for help and support, and there is a lot of guilt associated with that.

Think before you speak to someone with chronic pain. There is so much we’re holding in — dealing with a life in pain and not knowing how we will feel from moment to moment. What you feel may be a throwaway comment could be the last straw to someone barely holding themselves together. 

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