I Have Chronic Pain, and Today, I Am Not OK

By: C.M
Via- The Mighty

As much as I would love to tell you that I am a strong, hopeful and logical spoonie, there are days when that is a complete lie. Days like today. Those of you in this fight with me understand. We cannot be pillars of strength and light every single day. We are only human and therefore, we need other humans. Today, I need to write and I need to know I am not alone in my struggle.

While scheduling another round of doctor appointments, I glanced at the weeks ahead on my calendar. I have three or more appointments per week, every week, until the second week of January. I work full-time, to the best of my abilities, and have basically given up my social life in an act of self-preservation. Suddenly, the realization of how much time I spend trying to maintain my body and health came crashing over me like a tidal wave. I broke down in tears right at my desk. I spent my lunch hour quietly crying to myself, just letting the tears fall in hopes they would cleanse me of the immense burden I feel. The truth is, I am not always the logical and hopeful person you see on social media, at work or even in my writing. Sometimes, I am unabashedly human in my sorrows and grief.

Today, I planned on writing about how I deal with the holidays being chronically ill, but I just couldn’t bring myself to do it. I am overwhelmed with emotion today. I am sick. I am tired. And, sometimes it makes me sad. I feel that people shy away from admitting their illness or diagnosis makes them sad. They feel it will bring them under scrutiny and potentially to another diagnosis of depression, anxiety or the like. They are scared people will urge them to seek professional help and they will be disappointed to see we are not always a pillar of strength. While I cannot say you don’t have depression or do not need to speak to someone, I can say that feeling this way, sometimes, is completely normal.

I am tired of hiding it with a fake smile and “I’m OK.” Even the strongest pillar will eventually crack, showing signs of wear and tear over its lifetime of supporting something. The pillar is not useless. It can still perform its job and is of value. It just needs a little extra attention and repair. Today, I am admitting my pillar has cracked a little. I need some TLC and time to repair. Today, I won’t lie to you and say I am OK, because I am not. Today, I will rest a little more and ask to share my load. And that is completely fine.

8 Things Everyone Should Remember If you Have Someone with Chronic Pain

Chronic pain is a condition that we all cringe when we hear, right? Imagine being a person that suffers from pain for more than 3 months. We also know there are many conditions which cause chronic pain such as back problems, arthritis, migraines and so on. It’s sad but not much more is said about how prevalent this condition may be. Unfortunately, it’s extremely common. Over 25 million people suffer from chronic pain in the US but a discussion of their problems goes under the radar. Chronic pain is not just physical – it’s an emotional journey. If you love someone that suffers from chronic pain, you will likely have to accommodate their situation as necessary.

Beyond the physical sensation of pain, here are 8 reasons why they suffer more than you think.

1. Chronic pain is invisible
Roughly 96% of illnesses are invisible meaning they do not have any external signals that point towards it such as a walking stick or wheelchair. After dealing with it for so long, they no longer grimace or cry every time they’re in pain. It’s possible they look perfectly fine despite being in pain.
It’s easy for it to be ignored as a disability simply because it’s unseen. Therefore their problems can be subject to statements such as “just fight through it” which are dismissive. Chronic pain isn’t the same as the common cold or even a broken leg.

2. It leads to depression
25% to 75% of chronic pain sufferers experience moderate to severe depression. This, in addition to being in frequent pain means it’s very easy to withdraw and stop engaging in day to day activities. It strains relationships with friends and family which in turn decreases their quality of life further. It is a vicious cycle that even affects how effective pain treatment is.
As Rachel Benner says, “it’s important for them to incorporate structure, activities, socialization, purpose and meaning into each day of their lives.”

3. They don’t know how it started
It’s possible to have pain without a clear origin or an injury that seemed to appear out of nowhere. Having a reason for an injury is helpful – you can be more careful next time. More importantly, it provides closure. Without a reason, prolonged pain becomes becomes completely meaningless and feels like terrible bad luck.

Bad luck should be missing the bus to work. Not years of pain.
Suffering without meaning creates questions that demand answers. However, those answers either don’t exist or require a very long time to discover. Both possibilities have adverse effects on their mood.

4. They don’t know if it’ll end
Especially if the person is young, this causes incredible amounts of despair. They start to wonder whether they can handle being in pain every day for the next 10, 20, or 30 years.
Here’s the kicker – it is possible there’s no end. It’s possible they could have to suffer from pain for the rest of their lives and this becomes more real to them the longer it persists.

5. They blame themselves
There’s an expectation to have gotten used to the pain after a while the same way one might get used to a walking stick. It’s easy to self-criticize for not being able to do certain things you used to like stay out with friends or complete work on time. Sometimes, they’ll want to fight the pain and if they fail, they’ll blame themselves for not working hard enough. This can lead to self-loathing and feelings of guilt because they cannot live life at the same pace as their friends and family.

Living exactly the same life as your peers is unrealistic when you suffer from chronic pain. The expectation to do so creates a burden they blame themselves for.

6. They aren’t making a mountain of a molehill
People often underestimate chronic pain. In combination with chronic pain being an invisible illness, they can often hear the phrase ‘you don’t look ill’ turn to ‘it can’t be that bad’.
We’ve all been in pain but it’s surprisingly difficult to imagine having a pain that lasts literally every day. It might be tempting to try motivating them using a pep-talk but it can result in guilt tripping which is be incredibly demotivating. It’s important not to use throwaway lines like ‘you’ll get over it’ because it distances you from the problem and isolates those with chronic pain.

7. It’s exhausting
Chronic pain requires a lot of energy. It’s like having four flat tires and half a tank of gas then starting a cross country tour.
Every activity ranging from getting out of bed to washing dishes to waiting for the bus takes a significant amount of energy. As a result of this, they might have to cancel plans and end the day early. Loving someone with chronic pain means cutting them some slack or planning more low-key events with them.

8. They appreciate your support

Suffering from chronic pain can feel lonely and hopeless. The relationship between a person and their pain is dynamic. It can change from apathy to frustration to hopelessness over time. These changes on a persons outlook on life and their pain are difficult to deal with especially if they become consumed with frustration. The changes are unique for every person so there’s no one-size-fits-all approach.
As you can see, chronic pain is just as emotional as it is physical. Having a person who simply listens and tries their best to understand can make that journey much easier.
A supportive friend is invaluable.
Your support is treasured dearly!

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