chronic pain information and awareness
(made by people who suffer from chronic pain / chronic illness)
i'm making this carrd to spread information about chronic pain and other related things such as hypermobility and EDS ( ehlers danlos syndrome) .This is something that i suffer with on a daily basis and want to make people more aware of it especially as there is lack of awareness though media and things such as film and tv.
click on the title to take you to the corresponding information :)
what is chronic pain? Chronic (also known as persistent pain) is pain that carries on for longer than 12 weeks despite medication or treatment.Most people get back to normal after pain following an injury or operation. But sometimes the pain carries on for longer or comes on without any history of an injury or operation.An example of this would be lower back pain and joint pain.
my viewpoint and experiences of chronic pain1) we often get told ‘oh you’re making it up’ etc from doctors and bother professionals, we don’t need it from the people we’re close to either.2) just because it’s hidden, doesn’t mean it doesn’t exist3) if we have to cancel & rearrange plans don’t get angry or frustrated at us, we’re already like that with ourselves as sometimes even doing the littlest of things can seem like a huge challenge to us4) some days are easier than others. how we feel from day to day changes, one day we could be at our worst point the next day we could seem ‘normal’. everyday is different and how were effected changes too5) looking ‘fine’ doesn’t mean we’re well. it can still take most of us all/most of our effort to do the slightest thing & if we look ‘well’ while doing so that doesn’t mean we feel like that6) side effects most often have side effects. for example, if i’m in heightened pain level, i feel nauseous and faint which then consequently sends me into a panic attack.7) ‘oh have you tried..’ we understand that you’re trying to help however most people with chronic pain have gone through everything and i mean EVERYTHING that can me done and we’re literally back to square one thinking of new things & combinations of things too8) it literally changes everything from how well we sleep, what we eat, what we wear, how we act & deal with things. it changes everything10) most of us tend to live in fear of what is next. the constant pain and fatigue has is constantly worrying of ‘will i ever find a way that i can ease my pain’ etc11) most of us aren’t expecting to be pain-free either, it’s wanting to have less pain so it’s manageable for day to day activities without suffering or feeling any consequences after12) it affects us mentally likewise with how we have good & bad days we also have good & bad mental health (mh) days too as it can take a huge toll upon how we see and view things. we can go from being all positive to rock bottom in a matter of minutes or hours13) most of us are willing to try everything and anything in the hope that our pain can be reduced in the slightest amount and anything is better than nothing for us
14) we just most often want people to understand us and know that it’s rare that we’re at 100%. after all, it’s the support from friends and family that get us a lot of us through it15) the slightest bit of encouragement and support can make most of us view things differently. just hearing somebody say ‘i’m proud of what you’ve done today’ etc can genuinely make us feel so much better within our selves and more often feel worthy of the life we have16) it can literally change who you are as a person and most of us miss the old version of us and desperately want it back.17) most of us are good at hiding our chronic pain so, if you know someone who suffers from it it’s probably best to know their signs & movements used when in pain. that can be increased fidgetyness, mood swings, being restless and many more18) as touched on before, take an observation in signs of mental health issues such as depression as with the fluctuation of daily pain it can also be mentally draining as well as physically19) provide support and empathy, weather you suffer from it yourself or not, most of us just want someone who will listen to them & their concerns etc.20) chronic pain is isolating. we most often feel alone, helpless & as though we won’t / can’t get better. it really can suck the life out of you and take away the person you used to be. on top of this, we can also feel like a prisoner inside our own body21) were often seen as the ‘mum friend’ just because we have to constantly carry medications, first aid kits etc just to get along with our day to day life22) most of us spend most of the time in the dark as waiting lists are quite long for most things and we’re most often sat waiting for that one letter or phone call happen stating we have an appointment in the hope that something new will work
ways to help someone who suffers from chronic pain1) understand that they may have to cancel plans some times as they're unable to move etc. do not take them cancelling personally. half of the time we want to come out and live our life normally however the condition can take over us!2) provide support and empathy, whether you suffer from it yourself or not, most of us just want someone who will listen to them & their concerns etc.3) NEVER give unsolicited medical advice. This is because they've probably already tried everything most people suggest. Also, sometimes it can be patronising, there is no 'fix' to chronic pain / related things. please dont tell someone to try something. I can guarantee you have found a miraculous cure!4) let's say you're planning to go out, and you know we're having a flare-up / a particularly bad pain day. please still invite us even if you know the answer will be no. its the thought that counts and we then at least know were still wanted, despite our condition.5) just because we have a smile on our face or we look to be okay, most of us can still be in agony. we have just learnt to mask it and appear to be 'okay'. so while we appears to look and be 'okay' please don't assume were fixed6) having a chronic pain/illness is exhausting and isolating. as someone who suffers from chronic pain, fibromyalgia and hEDS, I find it helpful when people ask how I am but to genuinely care on progress etc when asking. most of us feel isolated and alone so even a genuine 'how are you doing?' can make us feel 10 times better but also less alone.7) if we ask an able bodies person for help, please don't question why we need that help. remember, not every disability is visible and most of the time it effects us that we cant so certain things on our won without help.8) show interest within our journey
this shows the person that you do genuinely care about how there doing / their path to diagnosis etc but most importantly it gives validation and helps us to believe that things are eventually going to become more manageable and 'okay'. it gives us hope!9) most importantly, let us rest!
when we need it, let us do so as most of us have insomnia, (chronic) fatigue and other symptoms along with our pain so please, if we need to rest, let us do so!
credits and thank yousi wanted to use this section to credit those who helped me create this carrd. those who helped create this suffer from chronic pain or a condition of which is similar or has chronic pain as one of its symptoms (such as hEDS)myself / kenz
isobel
river
muzze
shan
click on the social media logo to go straight to that person's profile! :)thank you all for the support on this, we would hugely appreciate it if you could share it around in some way shape or form!
what is toxic positivity within chronic illness?have you ever shown some positive, fake, happy verbal because you didn’t know what else to say and you didn’t listen to what the other person was really saying? or criticised others for expressing frustration or anything other than good vibes 24/7? if this is the case, you may be unknowingly throwing around some toxic positivity without realising.examples include
i know someone who tried this
my 'insert relative' did this and i workedeverything happens for a reason
what doesn’t kill you makes you strongeryou just have to think or be more positiveyou’ll be fineyou’ll get over it or get used to itpositive vibes onlyeverything works out in the enddon’t worry, be happyit could be worseit is what it isthe issue with unsolicited medical advice
'have you tried x?' it is pretty much a universal experience that people with an illness or disability will receive about their lifestyle, and most often from someone who has little to no medical knowledge or little knowledge on their medical history.while we know that you’re just trying to help, its highly unlikely that what your going to suggest will work/be proven to help their condition. this advice forces us to disclose intimate details of our health with strangers who know nothing of our individual medical situation and to talk about whether or not we’ve tried what they’re recommending. It’s uncomfortable and frustrating.the constant unsolicited advice, questioning, and imploring to try something different becomes very invalidating. You don’t just hear a helpful tip to try, you hear that you aren’t trying hard enough, that using medication to treat your condition means that you’re giving up or aren’t willing to seek out a non-medicinal alternative. you hear that all of the work that you and your doctors have done, the tests, the procedures, the trial and error of different combinations of medications and treatments aren’t enough and that you need to try a different path. you hear that if you did give these suggestions a shot in the past, you didn’t try long or hard enough, you weren’t following it correctly, or you bailed and took “the easy way out.”so while we know and understand that you're trying your best to help, most of the time you're doing more bad than good.