The American College of Rheumatology (ACR) has been a ‘go-to’ place for ‘reliable’ and ‘trusted information‘ regarding musculoskeletal related health conditions since before I was even diagnosed. Long before I was a patient support group leader, patient / health / research advocate and CEO of fibroflutters.com.
The aim of this post is to share a link to the ACR help pages for patients and caregivers living with Rheumatic Diseases. You will find an array of helpful information about possible treatment approaches, advice about the common medications used for rheumatic disorders. Where to find trusted resources, and gain access to health professionals, to help you with your health journey and live-well with your conditions.
It is essential to remember that caregivers also need access to these kinds of resources as they need to be just as educated as ‘you’ the patient, in some cases possibly even more. They know how your illness affects you, your mobility, your sleep, your energy, whether medications seem to bring on unwanted side-effects, or simply don’t appear to be working enough to help improve your quality of life.
Who are the patients?
Okay, I know some folks may be wondering why I have included this question, but it won’t take long to explain.
When it comes to Rheumatic diseases and Rheumatic health conditions a lot of people automatically make the ‘assumption’ that we are referring to the elder generations of people. It wouldn’t be right of me to write this post and fail to mention the fact that children get Rheumatic diseases too. In fact it doesn’t matter what your ‘age’, or ‘gender’, is so we must remember to consider all possibles when discussing patients of rheumatic conditions.
Who is the caregiver?
A caregiver can be anyone from a parent, child, nurse, homecare visitor, sibling, friend, or spousal partner. They can be of any age including older parents of children with disabling rheumatic illnesses not just us as ‘children’ taking care of our ‘elderly parents’, grandparents and family members. This is often missed by us because it becomes routine and we don’t realise that what we are doing is actually care-giving!
Caregiving is a role that is frequently difficult to cope with especially if you don’t have access to help and useful reliable information about the illness, how to manage living it as if you own the condition yourself.
Doctor’s are often complacent, especially if they are unaware of the extent of the caregiving that you provide. It is necessary sometimes for you to educate them so that they can provide their patients with the most appropriate treatments and guide them to a more healthier and sustainable life. Working in tandem with the Health Care Professionals is not easy for many patients, so it is important for the person that you care for to make their healthcare team aware that ‘you’ are their personal care-provider and support system.
There are many reasons why you should do that!
The main reason being that your voice will become more recognised and you are more likely to be taken notice of. Otherwise you could be anyone.
In my opinion, based on reading, observations and group members comments, it appears that everything must be ‘regimentalised’ for health-care systems because their working approaches are still quite ‘antiquated’ and not modernised to suit modern day living situations where families do not all live together in one home anymore.
For example when my parents first got married they lived with my fathers parents, and family including siblings, in one residence. When parents get older it is assumed the children, and grandchildren, will be around to help the elder members of the family. I know my family does not live like that, in fact we all live quite a distance from each other not even in the same towns, cities, counties and even countries. This is the norm for many families, so friends are often the care-givers and because they are not family will not be privy to medical info given by HCP’s as a result, or given a say in how treatment plans are implemented. This is why it is important to make sure that they know who a patient’s caregivers are!
Working in tandem with #HCPs isn’t easy for #patients. It’s important for who you #care for to make their #healthcare team aware that you’re their #caregiver and #supportsystem. #resources for #rheumaticdisease #chronicillness @ACRheumTweet
Please find the following resource useful and helpful.
If you agree with me that it provides information that can be used by both patients and caregivers remember to share and pass it on!
Source of Resource American College of Rheumatology:
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Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in and be socially responsible for each other!!
FIBROFLUTTERS CHRONIC*INVISIBLE*RARE ILLNESS SUPPORT
Patient * Health * Research * Pharma * Advocacy
Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.
and if you have a problem we are always open to discussion, just e-mail Carole
MANY THANKS in advance for your understanding –
from the administrator – fibrofly73 aka Carole
Many thanks for reading