Chronic pain- The Invisible Titan (Jasmine Martin)
I have dealt with chronic pain for so many years now that I have lost track of when it even started. I have chronic pain in a significant portion of my body that is triggered by a plethora of different things, I also struggle with chronic headaches (some are migraines but I haven’t had a migraine since getting my daith piercing) and terrible period pains. Basically I am almost always in some kind of extreme pain or discomfort and I have come to learn that people who don’t experience chronic pain tend to make those who do feel as if they’re weak or dramatic or attention seekers. So I wanted to write about this to help chronic pain suffers know they’re not alone and to help everyone else understand our experience a bit better.
If I were to guess how long I’ve had chronic pain, I’d say its maybe been close to 10 years now. So naturally I have heard ALL the ridiculous things people say from lack of understanding. I have been made to feel all the shades of guilt possible by people who take my illness personally too. So for a little bit of fun let’s list all the insane things people say when they hear that you are struggle with chronic pain:
Just walk it off
Can’t you just take pain killers
I’m sure you’ll feel better later
You said you were in pain the last time you couldn’t go
People just have to suck it up in the real world
Back in my day we didn’t complain about these things we just did what we had to do
You need to just get over it
You can’t let this interfere with your work you just have to suck it up
I think it’s all in your head, no one can be in pain for this long
I’m sure one drink will be fine, you can still take meds later on
One drink won’t trigger your pain, that’s dramatic
Why don’t you ever go out
Why are you always leaving so early? Cant you stay longer?
I also have a headache but you don’t see me leaving
Surely you must be exaggerating a bit
Honestly the list goes on, But if I were to keep going we would be here all day. The problem seems to be that people can’t see your pain. They think if they can’t see your pain it’s not real or you’re exaggerating. For some context if somebody with a visibly broken leg were to tell you that they’re in pain and need to leave or they can’t make it too an event because of the pain they’re in, there is no way anyone would say the things that I mentioned above. But because our pain isn’t always outwardly visible to people they think it’s acceptable to say these things. This experience in my opinion makes people with chronic pain try to pretend it’s not there when they’re around people. They push so much harder than they should push because nobody seems to understand their experience they’re just judged for their decisions. One of the biggest things that people don’t understand about my chronic pain is how exhausted I am sometimes. It can be 9:00 AM and I am so physically drained that people just assume it’s my fault somehow. This is another reason that we pretend that we’re not in the pain that we’re actually in. We try and make up another excuse that is easily understood by people so we don’t have to explain why we really feel the way that we feel.
Here’s the truth about chronic pain:
It is physically and mentally exhausting! It drains you completely.
Chronic pain has more side effects than just being in pain. Your mood is affected, sometimes you physically swell or bloat.
You can end up in other pain because of the chronic pain, ie getting headaches from being in long term pain and distress.
You generally end up with dark circles under your eyes and look like you haven’t slept in three years because chronic pain can greatly interfere with your sleep and taking painkillers too often can do the exact same thing. So often you end up having sleepless nights and looking terrible the next day.
There is some real anxiety and depression that comes with chronic pain. Even if you don’t generally suffer with anxiety and depression there’s Anxiety and depression that is triggered by your chronic pain. The anxiety is usually brought forth because you’re anxious about being in pain when you’re around any triggers and the depression comes with being in pain 24/7 and feeling like you can’t do anything that you need to do, you end up feeling like you can’t perform or function properly.
Sometimes you have to take meds multiple times a day times a day or multiple days in a week. Frequent use of your medication can definitely cause symptoms too. One of the most common being really bad headaches from taking meds too often or you get the headaches because you’ve stopped taking the meds.
The anxiety around addiction is terrifying and something that is a real stress in our lives. When you have to take strong medication as often as we do you start to stress about possibly becoming addicted to the medication. For me this leads me to stop taking medication when I need it for long periods of time out of fear.
Even though our experience with life is one that is painful and stressful and full of depression and anxiety, we still are expected to function at the level of somebody who isn’t experiencing what we’re experiencing. That means living a normal life; a 9 to 5 job, possibly a family, all while struggling with a really taxing illness.
Not everyone has medical aid. Imagine the stress of constantly being ill but not having the medical aid to create any comfort.
Your family and friends aren’t always supportive. Your illness is met with judgment
Sometimes foods trigger our chronic pain. This means we have to be really conscious of what we eat or drink or we have to eat and drink things with the understanding that we are going to be in extreme pain later on.
When we go out we have to think of the environment that we will be in. This basically means that we have to think of all the triggers that we could possibly could encounter; the environment that we’re going to be in, the food we’re going to be eating, the noise levels, how bright the lights are.
Our pain can flare up so quickly that one minute we can look like we’re having the time of our lives and the next we need to get home.
We feel extremely bad when we have to cancel plans or can’t go somewhere because of our chronic pain. We feel like we’re inconveniencing you even though we’re the ones who are in pain. It’s ridiculous but we feel immense amounts of guilt.
When we find somebody who understands what we’re going through, even if they don’t suffer with chronic pain themselves, we want to spend time with that person. Not feeling judged is such a rare thing we cling onto it.
Often we’re willing to try out-of-the-box ideas to deal with our chronic pain because pharmaceuticals haven’t fixed the problem that we’ve dealt with for so long. Sometimes these therapies might seem ridiculous to other people but we’re willing to try things that could help us. A great example is the daith piercing For migraines. This is one I’ve personally tried that has been such a huge help in my life. I was struggling with migraines for almost two or three years. It might seem crazy to some people and it doesn’t work for everybody but we’re willing to try things that might help us because we really need the relief.
So how can you be supportive of somebody with chronic pain and how should you respond to their experience:
Firstly you need to understand how chronic pain is defined: Chronic pain can be defined as persistent pain that lasts weeks to years. Think about the worst headache you’ve ever experienced. Now imagine it was 10x more painful and it came with extra symptoms like visual disturbances/ temporary blindness in one eye, nausea and vomiting. Then imagine it lasting for 8 hours to three days and even more sometimes. No break just constant pain. I’m using a migraine as an example, but other chronic pain is just as bad and just as uncomfortable. So try to understand what the person is going through. Ask them questions, Ask about their triggers or how their pain affects their life.
Give the person the space to express themselves without judgment.
Don’t claim to know more than they do about it or about their triggers.
Dont try to catch them out in a lie because you don’t believe that their chronic pain is real.
Understand that not all illness is visible. Once you understand that their illness is very complex it’ll be easier for you to understand why making plans with them is so difficult.
Don’t make them feel like they’re at fault and don’t make them feel like they’re ruining your plans.
Understand that chronic pain is a disability for us. It makes our life so much more difficult.
However much you think you’re being inconvenienced imagine having to deal with that 24/7 while being in pain.
And if you’re dating somebody or married to someone who is in chronic pain just be supportive sometimes all we need is a good cry. Life is really difficult being in pain all the time so just be there for your partner and understand that sometimes we will choose to do the things that triggers our pain in an attempt to have a somewhat normal experience with life. Don’t judge us for the decisions that we make it is really mentally taxing being in pain all the time.
I hope this will help change your view a bit about chronic pain and help you understand those in your life who suffer. This battle is a tough one, but everyone out there fight it each day should know they’re not alone in this. If you are feeling down and need support, please don’t hesitate to reach out to us here at Letters Against Depression if you haven’t already. We send letters of hope and support to those who need someone there for them. You can request to receive letters here.