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The Inconvenient Truths About Life with Arthritis and Chronic Illness – by Ashley Boynes-Shuck

I’ll admit it.

I, like many of you, have, at times, grown weary of hearing, “You need to exercise. You need to eat well. You need to think positive thoughts. Sleep is important. You can’t give up,” and so on.

But, I recently had a lot of health crises that led me to have a wake-up call — an “epiphany” of sorts.

It was this: there’s a lot of things out there that we get sick of hearing, or that we don’t want to acknowledge, but, they are just some of the truths about living with arthritis and rheumatic disease — and as inconvenient as they are, we should probably listen to them. The following subjects are touchy with many RA patients…but…there holds a lot of truth in those things we “get sick of hearing.”  Read on …

  • Exercise – I know that for a lot of you, exercise is the bane of your existence. It’s difficult, right? Not only do we have the pain that comes after a workout, but, we have pain during. And before. And all the time. And it’s more pain than the average person might have. Plus, there’s the whole fatigue thing. BUT…what if I told you that all of those people who tell you how important that physical activity is, are right? Because they are. Did you know that just laying for 12 hours drastically affects the cardiovascular system? It can raise the resting heart rate and throw circulation off-kilter. So if you spend a whole day laying around, and then you go to sleep at night, and then spend the next whole day laying around, what do you think you’re doing to your body? This is one way how deconditioning and dysautonomias can develop — yup, it’s that serious. “Laying around” can ultimately cause your circulatory and sympathetic nervous systems to go out of whack — not to mention that a sedentary lifestyle increases your risk for stroke and heart disease….and it isn’t good for your joints, either. That’s why the old idea that exercise was “bad” for arthritis has been thrown out the window, and a “use it or lose it” approach is more widely accepted these days. Think of yourself as the Tin Man – exercise, even if it is mild like stretching or a brief walk – is the oil to your joints. If you are having a flare day and can’t exercise, you should try to at least change positions often to get your blood flowing. It’s amazing how interconnected the systems of our bodies are. Staying active isn’t just about “losing weight” and exercise isn’t something people do solely for shallow reasons such as looks or entertainment. It is really, really important for our blood to pump through our bodies and deliver oxygen to our muscles, tissues, and vital organs. So if you don’t want to exercise for yourself, maybe you should consider doing it for those around you, who want to keep you around for a long time to come! There should be “no excuses!” The inconvenient truth is this: while you may not be able to run a marathon or do gymnastics, simple stretching and short walks can get the blood flowing. And if you are able, even simply standing more frequently throughout a day’s time is good for your cardiovascular system, spine, and joints. You can do it!
  • Diet – While there is no “one size fits all” diet for arthritis or for, well, anything, really, I realize more and more each day how important what we put into our bodies is to our overall health and well-being. Here’s an inconvenient truth: sugar is bad. Artificial sweeteners are bad. Pop is bad. People will defend Coke (or whatever your drug – er, soda – of choice is) to the death, it seems, but here’s the deal: it’s really, really, really bad for you. In moderation, on occasion, if you want it, go for it. No one is perfect! But really, people with inflammatory conditions should nix the sugary drinks, and no one should be drinking soda on a daily basis. NO ONE. Water, natural juices, and green teas are far better options. I myself struggle with the sugar issues – cakes and desserts I could do without, same goes for pop, but gummy candies…oh, boy…do they tempt me. Plus, I’m guilty of adding sugar to tea. I’m trying to cut back. It’s a good first step. Some studies show that sugar is more addictive than heroin, so it’s no wonder that people get irritable when they give up pop or chocolate. They’re going through legitimate withdrawal! Sugar-free is the way to be, though, and not just for folks with diabetes. If you’re on certain immunosuppressants, you should cut back on sugar, too. I know it’s easier said than done, but some immunosuppressants make us prone to candida and other infections — and sugar feeds infection. I’m not preaching. I’m with you all in fighting the battle against sugar. I just know that doctors and nutritionists know what they are talking about when they tell you to give it up. Some folks with RA recommend going dairy-free, or gluten-free, too. Whatever floats your boat. Just remember that eating healthily is not just something “those kinds of people do” — it’s something that we should all do. Our nation is very unhealthy and I have to wonder if a lot of that has to do with — you guessed it, food. Another inconvenient truth? Your mom was right. You SHOULD be eating those veggies. Especially spinach – VERY good for you!
  • Obesity – Oh, another hot-button issue. I’m just going to say it: our country has an obesity problem. No judgment, just fact. So let’s remedy it. If you begrudgingly start to make lifestyle changes in regards to inconvenient truths 1 and 2, then this issue should slowly start to fade. Even losing 10 pounds can take a drastic amount of pressure off of the knee joint. So, let’s change up that saying and say, “no gain = less pain!”
  • Attitude – I would never say that someone’s negative thinking brought on their illness. To me, that’s just silly. There are very few ailments out there that people actually bring upon themselves. Certainly arthritis isn’t one of them. That being said, I would be open to the fact that someone’s positive thinking CAN get them out of their illness. There’s LOTS of scientific research out there on the power of positive thinking. From noetic science to the placebo effect, there are many examples of people “thinking themselves better.” Now, I know this notion angers many of you. But that anger? That could be holding you back. Bitterness, envy, anger, moping – these things can all lead to dangerous territory. If thinking optimistically won’t heal you physically, it can at least help to heal you mentally and emotionally which, for some people, is even more important. There’s a lot to be said for the whole, “mind over matter” thing; and the whole notion that you can “do whatever you set your mind to.” Envision a healthy you, a better you. Affirm this to yourself every day, practice acts of kindness, remember to practice gratitude, mindfulness, and the like. You may see your circumstances start to change — and if nothing else, the people around you might be grateful that you’re more pleasant to be around! Just because you are sick doesn’t mean you have to act like it. It doesn’t have to be your identity in life. You’re more than your illness, so don’t get stuck in the “victim” mindset. That’s the easy way out. The inconvenient way is to push through with a smile. Give it a whirl!
  • StressAccording to the Center for Disease Control, over 90% of illnesses are believed to have STRESS as a causative component. That is an absolutely staggering statistic. Some of you may not work because of your condition, but you still have stress — the stress of NOT working, the stress of being a “full-time patient,” or the stress of managing a household. Whatever your stressors are, try to be aware of them, and try to reduce them. It’s HARD to completely eliminate stress but it’s worth a try.
  • Medications – Our nation is facing an epidemic of painkiller addiction. I implore you to consider if you really need pain medications. Ask  yourself if you are taking them properly, exactly as your doctor prescribed, and only as-needed? Most responsible doctors will prescribe these as a last resort or for “emergencies” – not necessarily for daily use and certainly not for preventative maintainance. If you think you have a problem with a potential pain medication addiction, please seek help. You could be making yourself worse instead of better. Overdoses from pain meds now outnumber overdoses from cocaine and heroin combined. Something needs to be done. Ask your doctor how else you can manage your pain – have you tried all other routes? Be open to something different, something new. Aside from pain medications, it is important to take note of the side effects you are experiencing from your other arthritis drugs. Does the benefit outweigh the risk? Are they making you better…or worse? Keep in mind that there isn’t just “one line of treatment” out there. What works for one person may not work for another. Remember that. This isn’t a one-size-fits-all problem. Additionally, take the time to consider which medications you really need to be on. Many times we see multiple specialists who all prescribe different things and end up on 10 different prescriptions – but do we NEED all of them? Sometimes, taking a medication that we don’t absolutely, 100% need, can do more harm than good.
  • Exploring options – You might not always want to hear what your doctor has to say. You may not always want to hear what your friend has to say. You surely don’t always want to hear what I have to say. But here’s an inconvenient truth: rheumatoid arthritis has no cure and affects many systems of the body. So what do you have to lose in seeking out a 2nd opinion? Trying an alternative therapy like acupuncture or massage therapy? What do you have to lose by trying out physical therapists until you find the one you like? What do you have to lose by cutting back on medications or asking to try a new one? I think if it’s your health then you should leave no stone unturned. Options are good. So, maybe instead of bristling when a family member or co-worker suggests a new workout or supplement for your condition, you could consider trying it. You might be surprised!

Now, I’ve probably managed to anger all of you at least once. And that’s OK. Because some of these suggestions or points of view used to irritate me. But, I’ve now accepted much of it as true, albeit inconvenient, parts of living with a chronic disease like rheumatoid arthritis.

I know that even though it is harder for me to exercise than the average person; that it is almost more important for me to exercise than the average person.  I know that I can’t exist on gummy bears and chai tea as much as I want to, and that I am far better off for giving up my ginger ale habit.  I know that juicing with fresh fruits and veggies is expensive, but I know that I can give up that mani-pedi in order to buy these important nutritious foods.  I know that trying to lose weight stinks. It’s hard. It’s no fun. But I also know that it’s better for me – and my joints, and my self-esteem – in the long run.  I know that my stress is never going to disappear, but I also know that it is unhealthy when not managed properly – and I know that it can exacerbate my conditions. I know that certain foods, as much as I like them, increase inflammation. I know that for many people, biologics are miracle drugs, but I also know that I personally can’t tolerate them. I know that at times we may need pain meds. But, I also know that many doctors over-prescribe pain meds and that many patients abuse them, sad but true. I know that there will always be a stigma against people with chronic pain and that people will usually associate arthritis with older people and I will do what I can to change these things, but I won’t walk around with a chip on my shoulder about it. I know that there is no right or wrong when it comes to treatment. I know that there is no way that anyone can be positive 100% of the time – but I know that there’s no harm in trying. Just as there’s no harm in acknowledging our real feelings.

I know that it’s really difficult to live with chronic illness. I know that it the “easy” way is NOT always the BEST way. I know that we “want” there to be “one-size-fits-all” solutions — but there aren’t.

The best any of us can hope for is to just try to live our best possible lives given the circumstances we were dealt. Sure, there are a lot of truths out there that we don’t want to hear – the truth hurts, after all – but, it is important that we recognize them and try to take charge. Don’t let negative thinking become a roadblock. Don’t become complacent in “being sick.”

The biggest truth is that you CAN still live, and still thrive, even if you live with arthritis or another chronic illness. The caveat to that is that you have to want to. To your core. You have to want it badly enough that you will accept those inconvenient truths and do something about it. I hate exercise. THERE! I said it! But I don’t hate it enough to accept the ill effects that NOT exercising has had on my body. If you want change, you have to make changes.

I wish you all the best of luck on this journey that we are all on together.

Stay Well,

Ashley Boynes-Shuck

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4 thoughts on “The Inconvenient Truths About Life with Arthritis and Chronic Illness – by Ashley Boynes-Shuck

  1. I agree Ashley, and I really try hard to excercise and I must say moderation is key. We certainly dont want to over do it. Accupuncture albeit expensive and not covered by many insurance companies can work very well. Surrounding myself with positive people has helped me immensely as I struggle some days. Thanks for sharing these very valid points.

  2. Great piece Ashley, thanks for sharing these thoughts.

    We are all in the driving seats of our own health, wellness & longevity, we aren’t victims of it. Actually having the will & courage to take control & do is the most important part.

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