One of the most frequent troubles Rheumatoid Arthritis (RA) patients struggle with is being understood. If you don’t have RA, it is a little hard to imagine what it is like. The morning stiffness that sometimes sticks around all day. The painful swollen joints, the deep fatigue, the stress of finding treatments that work and the load of side effects that often come along with treatment, make for a complex life. A life that is often also lonely as mobility becomes a challenge. Loneliness that is even deeper when friends and loved ones do not understand what they are dealing with. We polled hundreds of rheumatoid arthritis patients to find out what they wish their loved ones understood about RA. Here are a few things your loved one with Rheumatoid Arthritis wants you to know.
A common misconception due to the name and a general lack of knowledge about the disease, Rheumatoid Arthritis is much more than arthritis. While stiff joints, joint pain, and joint deformities are indeed a big part of how RA shows its teeth, that is far from the only area this autoimmune disease impacts.
RA is a systemic disease; this means that it attacks the entire body. Heart and lung tissue, tendons, eyes, vocal cords and muscles are also on the possible hit list for RA. It brings with it increased risk of cardiovascular disease, lung disease, various forms of cancer, wasting sickness, blindness and so much more. Unchecked, Rheumatoid Arthritis is deadly.
Managed, it is still chronic. The most common and persistent symptoms of disease activity are pain, stiffness, fatigue, depression, and brain fog.
Fighting a chronic, debilitating disease like RA can sometimes feel like a full-time job. Medical appointments, treatments, diet and exercise regimens to keep the disease in check often dominate the lives of patients. Because even among professionals, there is a great deal of misunderstanding about the scope of the disease, patients often have to fight for the medical care they need. Successful management takes a team of professionals including rheumatologists, orthopedic doctors, physical therapists, massage therapists, psychiatrists, and various other sorts of doctors when heart, lung, eyes etc. become impacted.
Medical treatments involve medications that shut down various immune reactions, leaving patients vulnerable to a host of issues. (If your loved one with RA cringes when someone in the room sneezes, this is why!) Frequent battles with infections and microbes are par for the course.
The possible list of side effects on these medications include increased risk of cancer, nerve damage, liver failure, kidney failure, hair loss, weight gain, fatigue, blood sugar abnormalities and even destruction of bones. Treating the disease often feels as dangerous as letting it do what it will. Patients are forced to choose which side effects and symptoms they can live with, and to hope none of the ones they ignore kill them in the end.
There is no one treatment that works for all. It is all a process of trial and error. Unlike many of the symptoms humans commonly face, there is nothing that eliminates symptoms for everyone. Every body responds differently to treatment. It quickly starts to feel like a game of medical roulette, will this help, or will it destroy a vital organ? Only time and trial will tell.
There is no one treatment that works for all.
This medical mystery and frustration is doubled when faced with those who, with the best of intentions, fill them with false promises of miracle cures. The fact is,
Knowing all the dangers associated with active RA, you’ve likely poked around online, talked to friends, maybe even health professionals, about how your loved one could feel better and be safer. Probably more than a few have suggested diet, exercise, herbs, various medications and supplements, all with promises to cure Rheumatoid Arthritis.
Something that you really need to understand and come to terms with is THERE IS NO CURE. This disease is chronic, it is not going anywhere. While it is true that many of the recommendations will make life with Rheumatoid Arthritis and disease management easier (If you consider restrictive diets and piles of supplements easy), none of those things will ever cure RA.
Once it is activated, there is no stopping it. The best any medical treatment or natural approach is likely to do is slow it down. In a small percentage of patients, times of “remission” may occur. Some are even able to stop medications and continue to be in remission. These cases are few and far between, and so far, none have lasted. RA always flares up eventually. Even on the most restrictive diets. Even when you do yoga daily. Even on medications with terrifying side effects.
So, while they appreciate that you want to help them feel better, please keep that miracle cure to yourself. They have heard it all before, they have probably tried it all. They are doing their best to manage their disease. What they need from you is understanding and support, leave the miracle cures to strangers on the internet. Trust me, they will get that little tidbit somewhere, and they won’t be annoyed with you for suggesting kale can cure RA.
Probably most important thing for you to know is that they are still the same person they were before RA came calling. They have the same dreams and desires, love the same activities, and truly want to live the life they lived before diagnosis. Sadly, quite often that life quickly becomes out of reach as managing RA and all the physical challenges it brings, forces them to change their lives.
They don’t have the same stamina, the pain wears them out, their bodies don’t function like they used to. Its more than pain, its debilitating muscle weakness, exhaustion, and remodeling joints. Whenever you feel annoyed that your bestie just can’t now, imagine how badly she feels about that.
Imagine you woke up tomorrow barely able to shower and dress yourself. Still think they need to just suck it up and go out with you anyway? Imagine you also woke up to find out you’d been injured by a hit and run driver in the night. That is life with Rheumatoid Arthritis.
Perhaps the most challenging aspect of managing autoimmune diseases like RA is the way symptoms can change so much from one day to the next, or one end of the day to the other. Pain and inflammation flares and calms in sometimes completely unpredictable cycles. A knee that works perfectly in the morning may be stiff and useless by afternoon.
To an outsider, not living in a body that can now and truly can’t later, it is hard to imagine why rheumatoid patients cancel plans when they do. Yesterday you saw them at the gym, and they were fine, it is easy to understand why you find their claims that they can’t walk today suspect. But this is the reality of life with RA.
When they say they can’t, they mean it. Believe them and try to be sympathetic. They wanted to join you, they really did plan to enjoy that day out, but they are not in control of when they can and when they can’t. They live their lives at the mercy of unpredictable bodies.
The fact is, cancelling plans disappoints them more than it disappoints you. They do it all the time and its never because they don’t want to leave the house. They have cancelled dinners, dates, shopping plans, medical appointments, days of work, showers, projects they wanted to do. The list of times they have felt the guilt of cancelling because they woke up in a flare are endless. It makes them feel weak and useless. They never feel as though they are in control. It is unimaginably frustrating. Let them know you understand their frustration, be disappointed alongside them, not disappointed in them. They have the self-disappointment covered.
It is hard to imagine life with RA unless you’ve lived it. A systemic disease, it impacts every aspect of life. Unlike the more common Osteoarthritis that comes with wear and tear as we age, RA can impact even the least used joints in the body. Joints you don’t even probably realize are joints.
It does so in a very chaotic manner. There is no real rhyme or reason to what it hits and when it hits. Inflammation can pop up at any time, leaving joints swollen, hot to the touch, stiff, and painful. Anywhere in the body. From jaw hinges to the tiniest of toe joints, any body part can suddenly become useless and painful to attempt to move. This causes every aspect of life to become a challenge.
From brushing your teeth to walking out the door each day, you move a surprising number of joints. Imagine if each of them felt as though they were welded shut. If you’d like to see what that is like, take a long rope, wrap it around your dominant hand so it cannot open all the way, now, wrap it around your elbow, then secure it to your waist. Be sure not to leave enough slack to raise your arm. Now, go ahead and get washed and dressed. Did I mention that you also cannot reach your feet today? Hope you have slide on shoes and don’t mind going without socks, otherwise you better leave 30 minutes to figure out how to get those feet dressed. If you had RA, all those restrictions would also be punctuated by pain.
Since we are getting dressed, let’s take a look in that closet for a minute. Remove every item with buttons or snaps. Hands ravaged by RA, the number one symptom of the disease, cannot manage buttons and other fine motor tasks. Many an RA patient has made the mistake of struggling to button their pants only to find themselves unable to unbutton them at the crucial moment. Yes, sometimes we pee ourselves, trapped in pants we cannot undo. There is nothing much more humbling than being trapped in pee soaked pants. So, let’s just remove those from the wardrobe. Also, remove anything with a small zipper pull, also a fine motor skill, zippers are another great way to become trapped in your own clothing.
Next, let’s take a good long look at that collection of shoes. Remove anything that ties, you can’t reach the laces. Heels are a no, your toes won’t tolerate a heal of any height, toss those to the side. Because your feet are going to swell, and may already be changing shape, also get rid of anything with a narrow toe, pointed toe, or slim instep, you’ll never get them on. How’s the shoe collection looking now? If you’re anything like I was when diagnosed, you’re down to a couple of pairs of clunky slip on shoes. Did I mention you’re attending a wedding this afternoon? Fantastic.
Speaking of weddings, let’s move on to accessories. See that collection of pretty hair ties, barrettes, clips and other things to add a little flair to your hair? In the bin it goes. Don’t worry, the hair will go soon enough, either because it is falling out (a symptom of RA and also a side effect of many RA medications) or because you can’t brush and wash it so you’ll get it cut short and manageable. Speaking of manageable, that jewelry box full of necklaces and bracelets with tiny clasps? Save it for your grand kids, give it to goodwill, you can’t put it on. Same for rings, with fingers that swell when they want to, rings are another great way to get stuck. If you don’t want to have it cut off later, leave it in the box.
At this point, you likely have a massive pile of things you can’t use anymore. Among them, likely some of your favorite things. Frustrated and sad? Welcome to life with RA. That was only what changed in the area of personal care. Notice we never even entered the kitchen or approached any household tasks.
It turns out, life with RA is full of obstacles. Literally every aspect of life is more of a challenge and many things are simply impossible without some sort of adaptive device. The world is full of doorknobs that can’t be turned, bottles and packaging that can’t be opened, stairs that make knees groan, the list is endless, obstacles are everywhere. And chances are…
Now that you’ve taken a walk in their clunky slide on shoes, you probably realize there are many times they are going to need help. So many, in fact, that chances are, they are not going to ask every time they need it. If they are stubborn and independent, they won’t ask for help a fraction of the time they need it. They also might not be inclined to let you help. Even on my worst day, I am not interested in help dressing myself. It feels too personal, too much like something a toddler could do, in short, it makes me feel incapable.
They don’t want to feel incapable. They do need help. Offers of help from you, really make their lives easier and make them feel loved and seen. It may be no big deal to you to bend over and pick up those dirty clothes they’ve been staring at all afternoon, to join them in the kitchen and offer to cut the veggies, to offer to help put on that necklace that makes their eyes sparkle. To your loved one with RA, those offers of help are offers of love. They are understanding and empathy. They appreciate them more than you will ever know. It may sometimes be hard to tell because
There is really nothing that alters someone’s sunny attitude like chronic pain. It is hard to be positive when you hurt literally all of the time. When all you want is a break from the constant ache of your inflamed body. It is not at all uncommon for chronic pain sufferers to lash out, become depressed, or both.
On days when pain is more intense, this can become particularly troublesome as your loved one becomes their least lovable self. Try to be patient and understanding. Know that what appears to be anger and frustration with you is actually anger and frustration at their own body. Possibly at themselves, as they beat themselves up for that sugary treat they ate yesterday, the exercise they aren’t getting and all the other little ways they might be contributing to the symptom flare.
Know that what appears to be anger and frustration with you is actually anger and frustration at their own body.
The truth is, it might be something they did, or it might not. Maybe it was that slice of cake that tipped the scale from a daily pain level of 4 to a holy shit, can we just cut my hand off now 9. Maybe it’s the weather, maybe they did too much yesterday, not enough, slept wrong, didn’t sleep. Possible triggers are everywhere, they don’t understand why they hurt, it is incredibly frustrating.
It’s also exhausting. Imagine walking around with the flu all the time. Body aches, exhaustion, brain fog, these are the most frequent and pervasive symptoms of RA. Sleeplessness due to pain and restlessness brought on by medication side effects are also a factor, as the more tired people are, the less tolerant they are of all life’s challenges.
Even good days are full of pain. It is the most persistent symptom your loved one with RA lives with. And no, Aleve doesn’t touch it. Narcotics don’t even touch it most days, not that those are an option for chronic pain sufferers, the dangers of long-term use are too high. They’re left to fight the pain with various over the counter remedies. They learn to live life in pain, to push through days and nights, hoping tomorrow will be better, as they toss and turn on a sea of pain. It is exhausting and undoubtedly increases the other most persistent RA symptom, fatigue.
Like chronic pain, chronic fatigue is a bit hard to imagine unless you have experienced it. I used to think it meant you felt tired a lot. I didn’t understand just how exhausted a person could feel until Rheumatoid Arthritis really reared its head. I still find it very challenging to put into words. Imagine you wake up underwater, but able to breath. Every movement feels as though you are dragging yourself through water or better yet, maybe it’s a good thick syrup. You also feel vaguely drugged, like waking up from anesthesia. You’re awake, but definitely not firing on all cylinders. If you’ve ever battled the all-consuming sleeplessness of caring for a sick newborn, imagine that had been 6 babies, and you were all alone, for weeks, that’s fatigue!
Exhaustion, brain fog, memory lapse, an inability to string thoughts into coherent sentences, all aspects of fatigue from RA. It can occur with or without proper sleep. You can sleep 10 hours a day and still feel fatigue. A kind of exhaustion that is unrelated to how much rest you get, there is little your loved one can do but hold on and wait for it to pass. While taking a nap might help a bit, they will undoubtedly wake up as tired as they are when they lay down. It’s a symptom that will go when it is ready and come back when it pleases. It is one of the more frustrating challenges RA brings to the table.
With a life filled with challenges, fatigue, pain, insomnia, and frustration it is easy to see that what your loved one needs most from you is understanding. They are juggling a rather heavy load, they often have to drop the ball to keep moving ahead, be okay with that. Pick up those dropped balls when you can.
Watch for the things they really struggle with, offer to take them off their plate, or, better yet, surprise them by getting it done while they take a much-needed nap. Encourage them on the hard days. Take time to appreciate the things they accomplish and celebrate the good days with them. Be a sympathetic ear they can turn to when the days are harder. They often feel alone in this disease, be the one they can turn to for understanding.