How Chronic Illness Has Taught Me There's More Than One Kind of Pain


I sometimes wonder what people without chronic pain and illnesses think living with a chronic condition is like. I’ve had some people say, “Is it just your abdominal pain?” and my response is usually, “There’s a long list, but mainly the abdominal pain.”

That long list is actually what makes living with a chronic condition so tough. Can you imagine reading out your list of aches and pains to every person who asked about it? Under the skin of chronic conditions lives a massive group of other problems. I want people to know that when someone says they have chronic pain, they’re probably dealing with a lot more than what they tell you.

Here’s a bit about me. I struggle with undiagnosed chronic abdominal pain. That’s the big one – the main condition. However, on the side, I have terrible hypermobility that leaves my joints frail and easy to dislocate; often they ache and overusing my joints can cause a lot of pain. Then there’s the scoliosis. Usually scoliosis doesn’t cause pain but in my case it does, and it can become very difficult and debilitating to deal with. I can’t sit, lie down, stand or do anything without it hurting. There’s no way to get comfy. I then have chronic fatigue and migraines. Then my seizures, another undiagnosed problem that usually leaves me injured after big ones. Next is my asthma that triggers more easily since becoming unwell. Usually an inhaler would last months, now it’s only weeks before needing a new one. I then combat mental health issues such as depression and anxiety.

woman with wires attached to her forehead

However, when someone asks me what I struggle with, my answer is chronic abdominal pain. Isn’t that so much shorter and quicker?

I rely on the support and help from family, friends and those within the chronic pain community, because I know they all understand that when I say “I’m in pain,” it could be any one of those things causing it, and they accept that when I complain about a particular part of my body being in pain that I haven’t complained about in a while, it’s real, and I’ll need to try treating the symptoms in different ways than my abdominal pain. They won’t say, “Oh, you’ve never had that problem before.”

Sometimes I use my wheelchair because my abdominal pain is too much for me to walk. Sometimes I use it because my knee joints are flaring up. Sometimes I use it because everything is flaring up and I still need to get outside to do things.

When someone has chronic pain, I always make the assumption there’s more than one type of pain they experience, and should they say something other than the main source of chronic pain is hurting, I won’t judge, I won’t get confused, I won’t even question them. Instead I’ll ask, “How can I help?” or “Is there anything I can get for you?”

 

I know it’s difficult, but sometimes when the pain is high and we’re exhausted and drained we don’t need questions asked about our health. We need to know it’s OK for us to just vent, complain and moan out loud about how much everything is hurting. About how it’s unfair we have to struggle through this, that there’s no cure and no answers to our questions.

I’m curious to know if anyone struggles with just one kind of pain, or if you have a long list of different things that cause pain. What’s the worst? What’s the easiest?

The most we can do is stick up for each other and comfort each other. While some of us are having good days, some of us are having bad days. We need to be there for one another. We already have so much to deal with – that’s why we’re warriors, fighters! We are so strong, we go through so much, we deal with pain that some people will never experience, yet we do it on a daily basis. We not only deal with physical pain, but mental pain that has been brought on by our chronic conditions. It’s made us lose jobs, family members, friends and even lost confidence in ourselves. What was once an easy visit to the doctor is now daunting due to the worry of being judged or called a “drug-abuser” or a “faker.”

But we’re not alone. None of us are. We wear our scars, our stoma bags, our IVs, our feeding tubes, our vog masks, our medicine boxes proudly; we show them off, we wear them with pride. It’s our shield to defend us and our sword to fight the condition with.

woman with wires attached to her forehead

Don’t let anyone tell you different. Don’t let anyone take away your courage and strength.

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