"To whom it may concern,

 

Not all pain management techniques are created equal and do not have the same effect for every individual.

 

I from the age of 8 have experienced chronic back pain, dislocating tendons and twisted ankles due to my disability. From 11 I started experiencing period cramps, a pain of which when unmedicated left me in bed for up to 2 weeks every month. This caused sickness because of overwhelming pain – every month. As I have grown older, I have developed increasing pain and weakness all over my body. Every muscle has a constant ache and I get sharp pains when I move from whichever muscle doesn’t like the movement or a joint doesn’t want to stay in place. Coupled with Chronic Fatigue Syndrome it is a tiring existence.

 

Pain management is ever changing and what works one week or month, may not work the next. I can’t take most pain medications and the ones I can basically have no effect. Instead I rely on topical creams like tiger balm and CBD to get some relief and a hot water bottle to stop muscle spasms. This all works to take the edge off, to manage, not stop pain. Exercise helps me and gaining muscle strength helps keep everything in place, but it requires energy and causes more pain. It becomes a catch 22 of something that will help but something that often is impossible to do. The only thing to ever almost completely stop pain is weed, a drug that the UK still refuses to legalise even though it proves to help so many people. It is a management I do on occasion and the relief from pain allows me to have restful sleep; something of which I rarely achieve despite sleeping on average 18 hours a day because of sheer exhaustion.

 

Despite this pain, I do not look like I have any problems. I have been yelled and called a liar from the age of 8 by adults that should have been there to offer support and understanding – including my own father and stepmother who thought my lack of attendance to school was master manipulation and laziness; they still don’t fully believe me to this day, even with 23 years’ worth of medical notes. What no one sees is the over 80% of the time I spend in bed, the time I am in tears unable to move, curled up on the bathroom floor because my body is overwhelmed by pain. I am being held hostage by my own body but look fine, so I must be.

 

Pain is not laziness, not being able to do something because of pain is not through lack of trying – pain is exhausting. Being told we look fine and told to toughen up plays into a self-doubt we will have had ingrained into us, especially if we are young. We will think we are faking it and don’t deserve support. Pain is invisible and we are made aware of that every day. The amount of pain I have to be in for it to have any form of visibility, is a level a person without pain would be asking to go to the hospital. People with pain will function as best as they can but need understanding that some things will take more time or just aren’t possible. If someone says they are in pain, it does not give you the floor to make it a competition about how much pain you had when you broke a bone or to say they don’t suffer or are too young. You have no right to talk about someone’s medical care if you know nothing about it and debate their level of pain. If someone says they experience pain, believe them.

​

Liz."