This post is going to be a bit of a moan, so apologies in advance! I’m just so sick of healthy people making judgements over the use of medication by the chronically ill. Particularly when it comes to pain medication.
No one likes being in pain, that’s a given. But for some people, this is a daily occurrence. Why should these people have to put up with comments about their painkiller usage from those who don’t suffer daily, excruciating pain? For some healthy people the first sign of a headache has them reaching for paracetamol, yet the majority of those with chronic pain put up with much more pain than this on a daily basis to avoid taking too many medications.
So what bought this about? Well, over the past two weeks I’ve been involved in three social media discussions where the use of prescribed pain medication has come under fire by people who just don’t understand. The first incident was when a friend of mind got attacked on Twitter for simply stating that she uses a strong painkiller. Just to clarify, those of us who speak about our conditions & the medications we take for them (pain & otherwise) are not doing it for attention or to seem cool. We don’t take these drugs because we want to, we take them because we have to! We talk about them publicly to raise awareness about the conditions we have, chronic illness & disability in general, the things we face on a day to day basis as a result of our conditions & what the steps we have to take to keep our bodies as healthy as possible. In some cases, this involves taking powerful medication.
I was really shocked that my friend was publicly attacked in the way that she was. The person commenting had absolutely no clue about my friend or her conditions, which he made evident when he referred to taking medication for a different condition! I understand that many people have been helped by lifestyle changes, diet, exercise & certain non-pharmacological approaches. This doesn’t meant that will work for everyone & every condition though! For some people, drugs really are the only option if the want a semi-normal life. This incident also made me very angry, so I joined in the conversation to provide some moral support to my friend, as well as backing up her points.
I then saw a tweet saying that Paracetamol should not be offered on prescription & that it is a waste of NHS funds. I agree with this to an extent. If you only require the odd paracetamol for a headache, you really should just buy a couple of cheap packets & save the NHS some money. I would also hope that paracetamol is only prescribed for those with long term pain conditions as part of their management program. But wait, there is a legal maximum of how many paracetamol tablets you can buy at a time! The magic number 32 was brought in to reduce the number of overdoses from common drugs such as paracetamol & Ibuprofen. If, however, you are one of those patients who takes 8 paracetamol tablets a day, then the maximum of 32 tablets per day you are allowed to buy from the chemist or pharmacy will only last you 4 days. Not only this, but did you know there is a maximum number of Ibuprofen tablets you can buy? It’s the same number! Think you can go to the shops & pick up 32 Paracetamol & 32 Ibuprofen? Think again! You can only buy a total for 32 tablets, so if you need both your supply will last you two days! Imaging being in constant pain, most likely with other symptoms as well & having to go out to the shops every two-four days! At the least, this would be an inconvenience. At the worst it would result in you not being able to take any tablets because you just can’t get them, particularly if you are housebound! So do we still think paracetamol should only be available over the counter & not on prescription?
When I highlighted this to the Tweeter, things got even more interesting! I was told this was an awful lot to be taking & asked whether there not something more suitable? I honestly wanted to hit my head against a brick wall! I have four chronic illnesses that cause chronic pain, Ehlers-Danlos Syndrome, basilar type migraine, Temporomandibular Joint Dysfunction & Premenstral Syndrome. For these conditions, I am under the care of two specialists, as well as my GP & other specialists when necessary. I’ve been on medication strong enough to knock out a grown man since the age of 14! If I weren’t allergic to them, I’d be on opioids too. It really frustrated me that someone who doesn’t know me, my conditions, who manages them, how they are managed or my current situation made a judgement that 8 paracetamol is a lot! Sorry, but for pregnancy it’s all I can have & if those 8 paracetamol take the edge off my pain, then I’m going to take them!
I had a similar conversation on Facebook when someone shared a link about how much the NHS spends on prescriptions medication like paracetamol.
What I wish people understood about chronic pain conditions is that most of us don’t want to be on medication. We’re on the minimum we can manage with to be able to function semi-normally & yet still in a lot of pain. We don’t take these drugs by choice, we take them through necessity. So please don’t judge our use of medication when you don’t understand the daily struggles we face.
Have you faced anything similar to this? What do you wish people understood about pain medication & chronic illness?
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I don’t understand why anyone feels the need to attack others over their choice of treatment. It’s no-one’s business. I am passionate about sharing what has helped me (in the hope it
may help others) but I am sensible enough to know that everyone’s path is different. No two people are the same. It’s not my place to tell them what to do because they know themselves far better and it would be ignorant or me to think otherwise.
I have written about medications for my condition and why I don’t take them– the basis being better options needs to be available as they work for too small a % (they didn’t help me). I can’t extrapolate that and apply it to everything else. Some people are narrow-minded enough to do that though.
Exactly Donna! Everyone reacts differently to treatments & pain management, offering support & making suggestions based on your own experience are great & may really help someone but to make someone feel like they are doing something wrong is unfair. It adds extra burden to someone already going through a lot. Xx
I think it’s difficult for people who have no experience to understand this, but that doesn’t make it right to ok someone for a) something personal and b) something you don’t understand.
I can’t imagine what it must be like to be in pain on a daily basis – I have no idea at all how it must feel. My Nan suffers from arthritis, and has done ever since I can remember, so I have some understanding that people may need be on strong painkillers on a daily basis. I wish that people wouldn’t stick their nose in and and rant when they don’t understand what’s going on.
Yes! I just wish more people could understand & bear in mind when dealing with those with chronic illness that it’s difficult to understand if you don’t have the experience. Don’t get me wrong, there are some really fantastic people out there who do know this & I’m very lucky that most of my friends & family are among this group of people. I’m so sorry to hear that you Nan has suffered for so long. Xx
I don’t think a lot of people who shared the NHS graphic, myself included, were judging those in chronic pain. It’s more concerning that people on benefits or other, who get free prescriptions, will go to a Dr for paracetamol on prescription purely because they want to save 30p for their headache or cold.
Your situation is quite different. And though I agree there should be more awareness it isn’t the majority. I wouldn’t bother with the people who don’t take the time to learn.
Rach // illustratedteacup.com
Oh no, I don’t think so either. I was referring in this post to personal comments made towards myself (not by people who had posted the graphic) when I started that there are some people who do need paracetamol on prescription for chronic illness. I do think there is a wastage issue in the NHS, which needs addressing & that patients need to be mindful of this, as it is not only wasting the cost of the medication, but also the appointment which could be used for someone who genuinely needs it. However, if Drs are prescribing things like paracetamol for occasional use, I think some of the blame lies with them too. I can’t imagine my GP prescribing anything that I can buy over the counter for infrequent use, but I wouldn’t ask her to either. Xx
Well said, Tania. I think it’s far too easy to jump to conclusions and most people don’t realise that paracetamol is a top-up drug for our stronger painkillers; we simply can’t take the paracetamol alone as it’d do nothing. Chronic pain vs healthy people pain = VERY different.
Sarah x
Thanks Sarah! Yes, exactly. I think people often generalise without thinking about the people on the more extreme end and how their generalisations may affect that group of people, who are usually the more vulnerable in our society. Xx
Paracetamol seems like nothing for your pain if as I looked it up, is just aspirin. I have been on opioid painkillers which rendered me functional and sometimes even those weren’t enough. While I was able to get proper pain management when I lived in New Jersey, whenI moved to Ohio I found it near impossible to get any help with my pain. Ohio is one of the top states where people die from painkiller ODs so the drug is kept away even from people who really need it. I guess that’s what bothers me the most, people abusing the drug and making it so difficult for people who really need it. Stopping by from Spoonie Bloggers and Vloggers.
Paracetamol in the UK is the same as Tylenol in the US. It’s roughly the same in terms of strength as aspirin though. I’m so sorry to hear of the difficulties you’ve faced getting help with your pain since you moved. I can understand the state wanting to reduce the number of overdoses, but not at the expense of people with a genuine need for medication to control chronic pain. It seems crazy to me that an already vulnerable group have to suffer further because of other people’s actions. Thanks for stopping by! Xx
I couldn’t have said it better myself! I have fibromyalgia and spent years completely bed ridden and the last couple of years very slowly making progress in living with the excruciating pain. I’m still confined to bed about half of the day. I’ve been on so much pain medication I lost track. I’m now down to just Tramadol and couldn’t cope with the pain without it. I am so shocked and disgusted at your friend being attacked on social media. If someone hasn’t suffered from a chronic illness or chronic pain they have no idea what we go through and how difficult life is. Nobody has the right to judge someone for this, you don’t have a clue what they go through. It gets me so annoyed as you can probably tell. So thank you for writing about this and bringing awareness! Katie xx
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Thank you so much Katie! I’m pleased to hear you’re making progress, even if it is slow. I really think people should mind their own business unless they know the individuals circumstances in depth & are trying to give genuine help. Making people feel like they’re doing something wrong just for trying to survive & function is awful & I’m sure the people doing it would be the first to complain if the tables were turned! Xx
Omg I can’t believe actually getting attacked for being on pain meds :( many a time I’ve tweeted its a codeine & caffeine kinda day, if I didn’t have to take meds for my lupus, fibromialgia, pernicious anemia, no iron & vit D deficiency I’d be one happy women , personally if anyone had a go at me they’d be told were to go ❤
I’m so pleased to hear you haven’t experienced this. I hope it continues this way! Like you, I would love to not have to take medication, but if I didn’t I wouldn’t be able to get out of bed! I quite like actually being able to have a bit of a life & am not going to give that up because a few people who don’t even know me disapprove! Xx
Exactly lovely ❤ it’s so hard at the best of days without negative behavior from people that don’t have a clue what’s it like to live with illness everyday, I’m happy to hear they are not putting you off, so glad I came across your blog, sending gentle hugs ❤
Definitely! I don’t know why people think it’s any of their business. Do they have that high an opinion of themselves that they think someone they’ve never met should listen to them!?! It’s crazy & I’m sure they would be the first to take offence if a random person started commenting about their lifestyle. Xx
32 tablets? That seems more like a “purse supply” amount. Here in the US we can buy larger quantitites, but my Rx is for a larger dosage so that I don’t have to carry 32 tablets with me in order to reach my 2 day dosage. I still carry quite a few with me as I learnt the hard to carry several days worth of meds with me at all times.
Exactly! I understand why they’ve done it & the suicide rate from medications like paracetamol has dropped as a result, but I don’t understand how people can then complain that it’s being acquired on prescription. Yes, there are people who play the system & should really be buying paracetamol, but there are people playing every system. People who genuinely need this help shouldn’t be made to feel like they are doing something wrong by those who don’t understand the individuals situation. Xx
I understand.. I get told all the time that a change of diet will magically cure me, when really my issues are mechanical in the sense that they are a result of malrotation and deformities. As a result, I suffer from pancreatic, biliary, liver and GI diseases and unfortunately, the only thing managing my pain and keeping me out of hospital, is fentanyl ans oxynorm. People are too quick to judge what they know nothing about.
I’m so sorry to hear you experience this too, from people who really don’t know what they’re talking about. I think it says a lot about a person who is quick to judge & offer their opinion without taking the time to understand what the issues are. It’s a shame that we’re the ones on the receiving end though. Xx
I totally get this. I’ve stopped posting about medication and my health so much on social media. I received so many negative comments and personal attacks I couldnt cope with it anymore. My depression worsened and I started medication for it.
I have fibromyalgia, arthritis, Lipo-lymphedema knees are bone on bone as cartalidge has gone.
I’m on numerous medications the strongest being morphine. I am currently in a lot of pain but this cannot be controlled so we are trying different drugs. The problem is I’m allergic to half of them! So am off work just signed off for 3 months and already been off for a month. I just hope I get back to work.
It’s so hard. We should be able to talk about our health on our social media platforms, both for ourselves and for others who are going through similar difficulties. People don’t understand how isolating the life of someone with chronic illness can be. Even when we’re surrounded by people, it can feel like we’re alone. Social media has helped me to feel less alone.
Sending lots of love your way! Xx
Gillian, I don’t post about my health on general Social Media, but I have found far more acceptance and understanding on the Migraine and Hemiplegic groups that’s I’ve joined. They’re generally closed groups, so outsiders don’t feel obligated to come in and throw their 2cents worth in the mix
Just an idea.
This is a great idea! I’ve seen a few problems in some of the health Facebook groups I’m in, but they’ve come from people not considering how another might feel, rather than not understanding chronic life. I’ve quickly identified the supportive groups and the not-so supportive and have only stayed in the groups where I feel people respect each other. Xx
Oh don’t get me started! People that don’t go through it shouldn’t judge, asking questions is more of a way forward but not in the context many are asked. I even get sick of Pharmacy assistants having a moan & stating the rules (I know they have to, to a certain extent), but having an argument when your doctor knows you take them & other meds don’t help..one of my bugbears.
So many either don’t want to know if they don’t suffer chronic pain, or, pass judgement. Great post lovely and one that deserves a moan!
H x
It’s so hard isn’t it!?! There are ways of saying things and pharmacy assistants moaning isn’t the way forward. You know what you take, why you take them and what the side effects are. A quick “Has you’re doctor spoken to you about the side effects?” is adequate and allows you to ask questions or flag concerns without feeling imposed upon. I’m really lucky that my pharmacy have always been fantastic. They genuinely care about me as a person. Xx
Right there with you! Not just general people making these remarks at me, but Doctors also, and medical staff! 1st migraine at 4yrs, chronic daily by 31yrs, Hemiplegic by 53yrs. I have Prinz-metal’s Angina, migraine induce Epilepsy and have had 3 strokes do to the Hemiplegia. I’m at the end of Stage 3 Kidney failure, fairly advanced Oseoarithritis, Moderate Asthma just to name a few. Besides Aspirin, I take the lowest dose Percocet (5mg/325mg up to 2x a day), and Stadol Nasal Spray (14 bottles per month). I’ve gone blind, stopped breathing, and started seizing during some of the worst of my migraines.
However, when doctors, medical staff, or just people around me, see me taking my meds or hear me talking about taking them, you’d think I was the DRUG SELLER to the STARS of Hollywood!!!
People don’t understand the kind of pain that Migraineurs go through. It’s a wonder many of us are still here. We DON’T ENJOY taking these medicines. It DON’T GET HIGH, WE DON’T SEE BEAUTIFUL TRAILS!!! I’m usually busy praying for just one more day with my family.
Turning 3 times in a circle to the right, bowing to all four directions, spitting 3 time into the wind and crossing my fingers for luck DOESN’T HELP ANYONE!!!
Some diet restrictions might indeed help, drinking more water (as long as your Kidneys are okay) might help. Their are some of us who “HAVE” tried everything we are able to, these the heavy pain killers being the only thing left to us for ANY RELIEF at all … at least/until perhaps the DNA based targeted drugs come out. Then we will have to see. Until then, this is ALL that is left for some of us. Please don’t judge if you HAVEN’T BEEN THERE!
I’m in the U.S. and I’m on Disability. However, NONE of my Prescriptions or Dr. Appointments are free! I pay a reduced amount, but still quite a decent amount for everything.
I find it particularly hurtful when it comes from medical professionals. These are people who should understand that we’ve tried everything else and NEED strong medications to be able to function. It sounds like you’ve been through so much with your health and the last thing you need is judgment for managing your conditions and making yourself a little more comfortable by taking medication. I’m always here for you. <3
Thank you. I’m also always here for you. It DOES hurt …and it’s so hard to keep on going sometimes.
Please take care.
Sincerely, Rilla
Thank you so much. Xx