A week or so ago a Facebook buddy of mine posted a quote on her news-feed and it resonated with me. I expect it resonated with a lot of people because many of the people I am friends with online are people I have made friends with through Chronic illness groups. The thing we all have in common and a lot of the time we are not believed when we say we are in pain every single day be it through Ehlers Danlos Syndrome, Fibromyalgia, Migraine, Arthritis, adhesion pain etc etc. There will be people in your own lives that you have no idea deal with pain every day all day because they have been conditioned not to speak about it or just don’t want to come across like they are looking for attention or sympathy.
This was the quote my friend posted;
I have spent some time this morning trying to locate the source of the quote so I can give an attribution to the author and unfortunately I can’t find it. I have read some quite interesting pieces of information from blog posts, medical sites and chronic pain forums I will post some links at the end of the post.
Many people with chronic pain are disbelieved , especially when there is no “evidence” of what is causing the pain or the images from scans or x-rays don’t correspond to the level of pain people are stating they are enduring. I had the same when I was suffering from terrible pains in my knees with my right knee being the worst. I was getting sharp pain under the knee caps when going up steps and suddenly out of nowhere when standing / walking. I was taking morphine so it was accepted by both me and my gp that it must be bad whatever it was for me to be feeling it…when the x-rays came back it showed really mild arthritis. Due to it’s location I couldn’t be offered an injection into the joint. It was something I would just have to put up with. He suggested some exercises to help, which mainly consisted of doing plie’s. After I did one in front of him and my knee caps made a sounded like a shotgun being fired he helpfully suggested that I avoided those! I still get the pain along with lots of others courtesy of my friend EDS, Migraines, Arthritis, Bowel Adhesions, Spondylisthesis etc etc
It’s not just the medical profession that have difficulty accepting that someone is in pain. So many times I have been involved in conversations where people have made judgements about others saying “well it can’t be that bad they manage to do X.Y. Z.” It is even sadder when it is people within the same community who know what it is like living with a chronic health condition and the pain that comes with that. Many of us do things that we enjoy as a kind of pain relief. When my Spondylisthesis shifted a few weeks ago and left me in excruciating pain, that was waking me at night, I still crocheted, used my sewing machine and my embroidery machine. I ensured I kept to strict time limits do never sitting for more than 15 minutes without moving and ensuring I had adequate pain relief onboard. If I hadn’t have been able to distract myself through those activities I would have had no relief at all. Yet some may have been quick to judge saying ” well it can’t be that bad she is still sewing etc”. I can assure you it was. There were times I would sew with tears rolling down my face, or feeling sick because the pain was so intense I was struggling to stand.
If the pain is that bad why don’t you lie down?? Was something I was asked. Well I would love to lie down but my back would never put up with me taking to my bed for days at a time as much as I would love to. My back manages about 8-9 hours of being in bed and then it gets so painful and stiff that lying in bed becomes part of the problem, I am the same lying on the sofa. My back hates being immobile, everything seizes up. It was the biggest issue I had when I needed to do strict bed rest when my CSF leak was at it’s worst in 2016. I just couldn’t do it without being in agony but then sitting up made me feel like my head was exploding. On those days I ended up hugging the toilet bowl as the pain was making me vomit.
The quote is true people with chronic unrelenting pain do operate at levels of pain that would floor most other people. I never know what level my pain will be at from hour to hour. Today I am in a lot of pain, I have no idea why. I haven’t done anything to cause that pain. My pain is in my hands…great when you are typing, my hips, lower back, knees and ankles. I have had a hot shower, hot water bottle and taken pain relief but nothing is touching it. The pain doesn’t stop, it is at about a 6/10 for me. I will carry on with my day as normal being aware of that pain despite doing other things. For pain to actually stop me doing something it has to be an 8/10 or above. Last night I nearly didn’t go to dog training as my bowel adhesion’s started up after eating dinner. I have been having problems with my adhesion’s a lot the last few weeks. I managed to get the pain under control with Buscopan and a huge pint full of peppermint tea. I was lucky sometimes it refuses to settle and just gets worse and worse until I am on the verge of passing out. Then it just tails off as quickly as it started.
Adhesion pain is one of the pains that will immediately stop me doing something. It feels like someone is attempting to remove my intestines through my belly button. It is a sharp pain the comes in waves. So the respite can be seconds or minutes before the next wave hits. Some days it starts as soon as I take my medication in the morning and everything I eat or drink that day will be followed by the pain. Other times I will be fine all day then in the evening I will end up screaming in pain due to it starting up out of nowhere. I can go months without experiencing this pain and yet at other times everything I eat and drink for weeks on end is an ordeal. I am in one of those phases at the moment. Yet if you were to look at my Myasthenia Kid page on Facebook or my personal news feed there would be no mention of it. Because although it really fucking hurts it is a pain I have lived with since I was about 5 years old.
What really upsets me when I am struggling with adhesion pain is when people who should really know better say something like “are you sure it’s not trapped wind as that can be painful”…my standard reply to that is “how many people do you know have fainted from trapped wind?” or ” how many people have ended up having major surgery due to adhesion pain?” That usually shuts them up. But it is incredibly hurtful to anyone suffering pain to be so casually dismissed as having something that yes can cause pain offered up as an explanation with the implied suggestion that you are making a meal of things or are a drama queen. I do often wonder why people do that, if someone broke their leg and were in pain I wouldn’t suggest they had stubbed their toe. Just because you can’t see my pain or have never felt it, doesn’t mean it doesn’t exist.
Also two people can have the same condition, it doesn’t mean their levels of pain are the same or that the condition will follow the same path. Everyone’s journey is different. Some people have a high pain tolerance and what they can endure would have others out cold. I know people in the EDS community that have endured root canal treatment without any anaesthesia because it doesn’t work on them. That has me sweating just thinking about it. I like to think I have a reasonably high pain threshold except when it comes to my mouth. I have gone through the removal of the side of my big toe nail without pain relief, I have had a lumbar puncture when my local anaesthetic has worn off and pretended it hadn’t. I have run company inductions ( when I was working ) with adhesion pain that had me crying in the toilets every time I left the room when a video was being played. I looked fine when I was doing the induction even though I felt as if I was going to faint.
I get sick and tired with the majority of peoples idea that pain somehow shows on a persons face. I have seen summing up by judges in disability cases saying that the person is showing no signs of pain or they have been seen laughing and joking so the pain can’t be that bad. Up until my pain hits a 8 you will find me cracking jokes, after that I start getting cranky and grumpy. When my mood changes with pain you know it has got bad.
We need as a society to stop judging people, stop trying to think because we have had that medical complaint that we know all about it, everyone experiences things differently. By minimising it or not believing them we take away their voice. As it is so many of us are already battling the medical profession to take our pain seriously, we don’t need to be battling friends and family as well.
Even when I am in horrendous pain he makes me smile.
https://www.health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360
http://nationalpainreport.com/future-doctors-unprepared-manage-pain-8822008.html
the myasthenia kid 