In a world where autoimmune diseases are becoming more and more common, why is it that people still don’t seem to understand what Rheumatoid Arthritis (RA) is?
Having an autoimmune condition means that the body is constantly in the process of fighting itself. Normally the immune system fights off unwanted visitors however with a condition like RA, the immune system is confused and instead has an internal battle with itself. This causes symptoms like stiff and painful joints.
Unfortunately, however, those that do suffer from the condition can find themselves in a frustrating situation where the world around them doesn’t fully appreciate or understand the implications of living with something like RA. In many cases, the individual has no physical symptoms. This means the only way they can express how they feel is through what they say.
Thankfully, I’ve been lucky enough to have family and friends that have taken the time to understand the disease. I’m sad to say that this isn’t the case for most.
Whether you are someone who has the disease, you know someone with it or you just want to learn a little bit more about what it’s like to live with it, here are the hard facts.
You might not see it, but it’s there
What do we tell out our children about Santa, the tooth fairy and the Easter Bunny? “Just because you can’t see something, doesn’t mean it isn’t real.”
The same is true for people suffering from RA and a number of other autoimmune conditions. Just because there are no physical symptoms, doesn’t mean it’s not there. These diseases can sometimes be the worst because they’re invisible. The individual is not only trying to manage this, but they also have to deal with people underplaying it, rolling their eyes at it or sometimes just not even acknowledging it. I’m not saying we want a red carpet everywhere we go, however, it’s important to take the time to understand what it’s like to live with a condition like RA so that you can support your family member, friend or colleague the next time they talk about it with you.
The pain is real
When the disease is at it’s worse, the pain can be so bad, its hard to imagine. I like to compare my worst flare up to childbirth. Now without blowing my own trumpet, I have a pretty high pain threshold. When delivering my little boy, I did this purely on gas and air, in a labour that lasted over 36 hours. However, when it came to my worst RA flare-up, it had me screaming in agony, rushed into A&E and placed on a morphine drip.
Other flare-ups have included:
- Being completely paralysed in bed for 3 days unable to move and walk
- Suffering the most excruciating pain in my face that I haven’t been able to speak
- Hands and feet so sore that I cannot dress myself, drive and even brush my teeth
And, once the flare-up has passed, it’s business as usual. However, it’s important to note that everyone’s symptoms are different. Some lasting a few hours, others weeks, some months and some every single day. Imagine living in pain EVERY SINGLE DAY of your life. It’s no fun.
You’re not lazy because you can’t get out and about
One of the most common side effects from RA is tiredness and this doesn’t come from being lazy. Just think about this for a second. Most peoples immune system hits high alert at different stages, whether through sickness, infection etc. However, someone with RA is suffering from an immune system battle most days. This is so tiring. Our bodies need the opportunity to rest and unfortunately when in a constant battle with itself, rest is just unrealistic and most sufferers struggle with fatigue. The thought of then having to get up, get dressed and get out, can be too much.
As with most illnesses, you’re given a bag full of terrifying medications to take and RA is no exception. The common culprits found in the bag of an RA sufferer are:
- Prednisone tablets – This is a man-made steroid drug which suppresses the immune system. It actually mimics the effects of cortisol, a naturally occurring corticosteroid produced in our bodies with anti-inflammatory effects. As this is mimicking the effects of something already created in our bodies, it helps to produce higher quantities of it. This means once you start taking the drug, you then need to be weaned off it to safely manage the reduction and allow your adrenal glands (that naturally produce cortisol) the time to readjust.Some of the side effects of this drug include headaches, nausea, weight gain and thinning skin. Some of the more severe side effects include increased blood pressure and changes to personality. For these reasons, I again made the decision not to take this medication.
- Sulfasalazine – This is known as a disease modifying anti-rheumatic drug (DMARDs). It aims to help lower inflammation levels, pain and swelling by damping down an overactive immune system. The drug itself can take up to 12 weeks before you see any real benefits. Some of the usual side effects include nausea, skin rashes and stomach pains with more severe effects including kidney failure or liver damage.
- Methotrexate – A drug previously used to treat leukaemia and other forms of cancer was introduced in 1947. Studies have shown the earlier this medication is introduced, the better long-term outcome for the patient. Again, this medication comes with a wide variety of side effects which can range from nausea, mouth ulcers, headaches and mild hair loss.
- Folate – Folate is a supplement based tablet which is prescribed to all patients who will take the methotrexate medication. It helps to counteract the toxicity associated with the drug.
Food DOES have an impact
There’s so much research out there that shares great benefits to changing your diet to help manage and even reduce symptoms. I’ve personally found this to be true.
Foods containing gluten have been proven to increase internal inflammation, which in turn, can trigger flare-ups. A number of people with RA have taken the decision to remove this from their diet. Personally, I’ve removed gluten and a number of other food items from my diet and I’m finding I’m able to manage my symptoms so much better. If you’re struggling with symptoms, try looking into different diets and experimenting with foods.
I also offer a personal coaching program specifically targetted towards those with autoimmune conditions and how you can manage your symptoms better. Click here to find out more.
Regular and sometimes uncontrollable mood swings
So when I was going through the worst of my RA nightmare, my mood was all over the place. Crying, stressed, depressed, angry, frustrated… you get the picture. I literally couldn’t predict how I would feel from one minute to the next. My husband compared it to a rollercoaster as I was so up and down.
I mention this because it’s normal for RA sufferers to have mood patterns that are slightly all over the place.
- Try waking up in the morning after having little to no sleep because your joints are so painful you can’t lay on them or even move them (emotional emotion incoming).
- Try feeling the pain coming on after having a lovely day out with the family and then spending the rest of the day in bed (frustrated emotion incoming).
- Try suffering from so much nausea after taking your medication that you can barely move (fragile emotion incoming)
- Try managing the normal family chaos with everyone needing something from you, but it being so hard to keep up (stressed emotion incoming).
As you can see, there’s so much to contend with and when you aren’t feeling the best, everything can feel so amplified and unfair.
What I learnt very quickly was that I needed to own my pain. Own it and use it as motivation to figure out how to manage it better. If you want to learn more about how to manage your RA or other autoimmune condition, take a look at my “Health Hacking Your Way To A Healthy Life” personal coaching program.