I decided to write this post because I’ve lost count of the number of conversations I’ve had with friends and other people, where I’ve attempted to describe what it really means to have rheumatoid arthritis.
Here are just a few examples of the genuine comments and questions to which I’ve responded over the years:
- “…must cause a few aches and pains”,
- “…you’ll be a bit stiff in the mornings then eh?”,
- “…oh yes, my mother-in-law had rheumatism”,
- “…yeh, I got it a couple of years ago, my ankles started swelling in the mornings; doctor gave me some pills and said I need to exercise more”,
- “…it’s very rare though isn’t it”,
- “…can’t be much of a problem for you though, you’re still young, it only really affects people in their 70’s and 80’s”,
- “…it’s not a ‘real’ disease though is it, not like diabetes or heart disease”,
- “…does it hurt?”,
- “…so where did you catch it then?”,
- “…well at least it won’t affect your work, it’s not like you’re a brain surgeon or anything”,
- “…rheumatoid arthritis, what’s that then?”.
What It Means to Have Rheumatoid Arthritis – From the Sufferers Point of View.
It was very frustrating for me (and I’m sure it is the same for many other sufferers) to have an disease about which, most people didn’t have a clue. Yes, I admit, there were many times when I wanted some sympathy… I wanted people to understand how difficult it was for me to carry out even the most simple tasks, which they took for granted. However, mostly I just wanted people to understand why I couldn’t shake hands with them or follow them, when they ran across a busy road for example. So many occasions where I had to explain myself, my reactions or my limits.
Please note in my experience (and speaking for myself), RA sufferers generally put a brave face on their illness and don’t show the true extent of the pain and difficulty they face. Also, for good reason, they often try to be cheerful and maintain a positive attitude. This is partly because they don’t want to impose upon or disturb the people around them, but in truth, it is mainly because they don’t want to become separated or isolated from social situations, or to be seen less capable in a working environment, or even at home.
Another important thing to mention is that people have different relationships with rheumatoid arthritis. A person who elects to follow an aggressive drug regimen will often manage quite well with RA and may appear to be quite normal, and again this is one of the reasons, I think, why many people misunderstand the true seriousness of rheumatoid arthritis, since they often see sufferers apparently acting quite normally. However, taking effective RA medication carries a heavy price in terms of side-effects.
So for anyone who would like to know how their rheumatoid arthritis suffering friend, relative, colleague, neighbour or acquaintance is really feeling, here is a list in which I’ve tried to describe the impact of RA and the limitations it imposes.
What Is Rheumatoid Arthritis and What Are Its Effects?
- Rheumatoid arthritis is a pain in the neck… jaw, shoulders, wrists, fingers, hips, knees, feet and toes. Sometimes just one of these areas; often all of them at the same time.
- Rheumatoid arthritis is very creative when it comes to pain, it is able to induce a wide variety of feelings many of which would make the Spanish Inquisition jealous; I would simply laugh at their ‘Comfy Chair’, probably like this: “haha haha haha hahaha haaa…”. :-) Seriously though, RA pain can be chronic and prolonged, ranging in similarity from a bad toothache, to having severe back pain for many months or years which prevented you from sleeping. RA pain can also be acute and very intense, like hitting your thumb with a hammer or hitting your ‘funny bone’ or burning your fingers on a hot pan and so on… but with one major difference; the pain doesn’t go away after a bit of cursing and heavy breathing ;-) it continues until you remove the cause or take strong pain killers.
- Standing up, sitting down, lying in bed, taking a bath, shaving, taking the tops off bottles and the lids off jars, lifting a kettle to pour tea, walking up and (especially) down stairs, reaching the front door before the postman pushes the ‘tried to deliver…’ card through the letterbox, waking up in the morning, brushing your teeth, standing (yes, just standing often requires huge effort) at a bus stop for example. These are all things which require creative actions when you have rheumatoid arthritis. New ways have to be found to accomplish these everyday tasks, for example I would often have to use my head to push myself out of a chair or to get up from a sofa. Getting in and out of the bath was probably the most difficult thing for me though, lots of water everywhere… huge fun – not.
- As I’ve mentioned in previous posts, I think the worst effects of rheumatoid arthritis (certainly for me) are psychological. RA gradually takes away your freedom, it gradually reduces your self-respect, it erodes your will power, it makes you feel more isolated. Life changes from being something to enjoy, something in which to achieve things, and becomes something to endure and something in which to survive.
- RA creates feelings of guilt too… you have to rely on other people, especially those around you. Over time, you become more reliant and feel less useful, you feel as though you are a burden, you feel guilty for not contributing enough and for taking too much. Believe me, it doesn’t matter how much a person cares about you or loves you, you still feel guilty. I think the reason is partly because of the nature of the disease; if I’d been hit by a bus and seriously injured, at least I would feel that I had an excuse or a reason for being unable to do things, but with RA, it just sort of creeps up on you gradually becoming worse over many years.
- RA is frightening, very scary indeed, I’ll explain why… First of all you feel helpless, the official consensus from authoritative sources is usually: inevitable doom and gloom, often relayed to you with a reassuring smile :-| The medical profession will provide you with choices which to me, many years ago, were as follows: “…would you like us to poke you in eye with a sharp stick, or we can put a sock full of angry wasps down your pants, or we can hang you upside down by your testicles; which would you prefer?”. Apparently these options were supposed to be preferable to the symptoms and effects of rheumatoid arthritis. I basically ran away screaming… but very very slowly! These days, things have improved ever so slightly and the choices for patients are a tiny bit more palatable i.e. doxycycline therapy and slow release subcutaneous corticosteroids. Another reason for the scary feeling comes from the material you read when researching your/our disease. Often it comes served with inspiring sentences like these: “…but there is no known cure for rheumatoid arthritis” or “…RA can be successfully controlled with today’s modern drugs, however, side effects may include kidney failure, blindness and sudden death”.
- “Rheumatoid arthritis is an autoimmune disease that causes chronic joint inflammation.” – This is the official description which is repeated over and over again on hundreds of RA related websites. In my decades of personal experience with this disease, it has always behaved like an allergy rather than a disease. My immune system is doing a great job, the problem was caused by me introducing something toxic into my system. Also, the inflammation ceased to be chronic as soon as I removed the cause. By this definition, a person who drinks heavily every weekend could be said to suffer from a chronic hangover.
- Finally, one of the most disheartening aspects of RA is the endlessly contradictory news and advice from so many sources. The drug companies keep announcing ‘miracle cures’ for RA which subsequently fade into obscurity. There are so many well intentioned books, websites and other resources offering solutions to this problem but where do you start. I tried many of these solutions myself, even though they often contradicted each other, but after many years of seeing little or no improvement, I became disillusioned and confused and almost gave up. It was at that point where I decided to develop my own rheumatoid arthritis solution.
I want to finish on a positive note because the above list paints a depressing picture of rheumatoid arthritis, even though it is often an accurate one. The point is; remove the cause of RA and you remove all of the above effects and all the negative consequences. The pain disappears, the inflammation fades away, your freedom returns, your self-confidence grows, you begin to enjoy life again and look forward to tomorrow.
My advice is simple, if you know someone with rheumatoid arthritis encourage them to try to find the cause of their disease (infection, leaky gut, food intolerance etc.) and in the meantime, encourage them to improve their diet and seek out the best medical treatment possible, by which I mean the most skillful, up to date and least damaging.