1. It is so much more than joint pain! You also deal with swollen joints, stiff joints, deformed joints, red joints, flaming hot joints and that is before we even move on to the non-joint related symptoms. Can I interest you in a sizeable dose of crippling fatigue? How about daily flu like symptoms? Oh, and there is the insomnia, the night sweats and the fact your immune system is slowly trying to kill you. Perhaps we should mention the fact that inflammation caused by Rheumatoid Arthritis also gives you dry eyes. We should also mention your broken immune system means you pick up every infection going. Then there’s the complications potentially arising from Rheumatoid Arthritis. The inflammation that can spread to your lungs and heart, the damage to joints over time and the increased risk of cardiovascular disease to name a few.
2. It isn’t an old person’s disease. Perhaps the worst thing you can say to someone with Rheumatoid Arthritis is ‘you’re too young for that’ or ‘my granny has that in her knee’. Rheumatoid Arthritis is typically diagnosed in people between thirty and fifty years old, but younger people get it too. You can be diagnosed with Rheumatoid Arthritis at any time over sixteen-years-old. Anyone younger than sixteen can be diagnosed with Juvenile Idiopathic Arthritis. Rheumatoid Arthritis does not discriminate based on age, or anything else for that matter. It is an autoimmune disease which means the immune system attacks healthy joints and it doesn’t matter if you are sixteen or sixty.
3. It isn’t the same as Osteoarthritis. There is a huge misconception that arthritis is arthritis. There are over 100 types of arthritis, including Rheumatoid and Osteo. However, there is a huge difference between the two. Rheumatoid Arthritis is an autoimmune condition, Osteoarthritis is a degenerative disorder. Rheumatoid Arthritis affects all the joints where as Osteoarthritis is linked to ‘wear and tear’. Rheumatoid Arthritis causes a host of other symptoms, whereas Osteoarthritis generally only affects the joints. Osteoarthritis is more prevalent in the older generation and its degenerative nature is also limited to only the joints. Both are extremely painful and have no cure, but they are very different conditions.
4. It’s easier to say you are fine than trying to explain all your symptoms and exactly how they’re affecting you that day. It’s lovely when people ask how you are but if you answered honestly, you’d probably have to talk for half an hour and it’s so much easier to smile and say, ‘I’m fine’. Plus, if you explained how you really were then you’d probably have to explain all of the above as well, and who has time for that?
5. You permanently feel like you have the flu or the world’s worst hangover. It is a truly delightful symptom of having Rheumatoid Arthritis and it literally never goes away. It is unimaginable to most people that you live with that everyday and therefore very difficult to explain.
6. You are exhausted, all the time. Even after 12 hours sleep and the 2-hour nap you took at 3pm. Fatigue is a crippling symptom of Rheumatoid Arthritis and one that is very difficult to explain to anyone who hasn’t experienced it. Fatigue is not the same as being tired, or even extremely tired. Even the most tired person on earth can fix that with a good night’s sleep or two. Sleep doesn’t cure fatigue. It’s like your battery is permanently low and, as a good friend recently said, your charger is also broken. Fatigue also means you have little to no motivation, you struggle to sleep even though exhausted and it impacts your ability to concentrate and generally function as a human being.
7. Jeggings and leggings are your best friend, so is any clothing with minimal fastenings. You rejoice when you find smart jeggings because you can actually get dressed in proper clothes without the pain and stress of zips and buttons! While we’re on this, shout out to all the men battling Rheumatoid Arthritis, the fashion world seems to have forgotten that you may need accessible clothing too!
8. You wear pyjamas or lounge wear pretty much all the time you’re in the house because they’re soft and don’t pull at your joints. You probably own more pyjamas than anything else and you celebrate when you find extra soft ones which don’t hurt you. Whoever thought that jeans were good casual clothing clearly never experienced the agony of denim pulling at their hips and knees.
9. You’ve worn pyjamas or lounge wear out of the house on more than on occasion because getting dressed was an impossible task. Sometimes a task needs doing and sometimes you can’t waste precious energy battling to get dressed into real clothing.
10. You completely lose track of your words or thoughts at least once a day due to brain fog. Brain fog is another wonderful symptom of Rheumatoid Arthritis, whether it’s related to pain levels or fatigue levels, it’s an inevitable part of life with this illness. It means your mental clarity is often lacking, as is your ability to concentrate on even simple tasks. It means you forget words and names, often at the most inconvenient times. It means you forget what you’re doing in the middle of a task, lose your car in the car park, put on your dressing gown instead of your coat and refer to lots of items as ‘the thingy’, ‘the whatdoyoucallit’ or the ‘thingymabob’.
For a great article on dealing with brain fog click here.
11. You’ve found random items in strange places because brain fog decided it was a good idea to put the TV remote in the fridge. It also decided the bannister is where you keep your glasses, the towel cupboard is where you put your phone and the kettle belongs in a kitchen cupboard or the fridge.
12. You can sense a flare up coming like a highly trained sniffer dog and just have to sit back and wait for the inevitable to happen. It is amazing how in tune with your own body you become when you have Rheumatoid Arthritis. You can sense a flare coming a mile off and you immediately take action to make it as bearable as possible.
For a great article by The Reluctant Spoonie on free things to do when you’re stuck in bed during a flare click here.
13. You have two stress levels – stress than is below the flare threshold and stress than will guarantee a flare up. You do your best to always keep stress below the flare up threshold, but life often has other ideas. This causes a great deal of frustration which then heightens the stress, which then worsens the flare. It is such a fun circle to be trapped in!
14. You’ve had to explain what Rheumatoid Arthritis actually is, even to medical professionals, on many occasions. It is scary the number of medical professionals who seems to think it is solely related to the joints, and it can be very frustrating when you know more about your disease than the ones who are supposed to be helping you! It can feel like a never-ending battle and it highlights how much more awareness of this condition is needed.
15. You scope out stairs, lifts (elevators) and accessible toilets are as soon as you arrive at any location or event. If there is no accessible toilet you panic slightly but then scope out where the other toilets are. If you realise those toilets are up any stairs, you then scope out if the stairs have railings. Either way, you limit the liquids you consume and pray you can get home without needing to climb mount Everest to pee.
16. You receive unsolicited medical advice far too often and usually want to scream when it happens. Don’t these people know that if goblin hair tea, unicorn dust, positive thinking or the latest exercise fad really cured Rheumatoid Arthritis we would know about it, and so would our doctors. Any sensible suggestions we have probably already tried, and the ridiculous suggestions aren’t even funny anymore, they’re just mind blowingy frustrating. Please keep your miracle cures to yourself, you aren’t an expert on our disease, we the people battling it are!
Thanks for reading, if you related to any of this then please give it a share with your friends. Also feel free to add your own suggestions for this list in the comments below!
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