What Others Need to Know About Rheumatoid Arthritis

What do you need those who may not understand RA and all that it entails to know?

RA is not the same as your aunt’s or your mom’s arthritis, which is more likely osteoarthritis limited to a joint or joints and caused by wear and tear. RA a systemic disease affecting any and every organ or system of the body. While joint pain is one of the symptoms, it is not limited to the joints like osteoarthritis. Patients and doctors are working to change the name to Rheumatoid Disease to better reflect the reality and create awareness that it is a full-body disease. The systemic symptoms of RA can be the most challenging and difficult to treat. For me, fatigue has been the longest-standing and most limiting symptom. Again, fatigue of chronic illness is very different from a ‘normal’ person‘s tiredness at the end of a busy day. I know this because I remember, vaguely, the feeling of being healthy but tired. RA fatigue is a constant, often crushing fatigue that can stop you in your tracks no matter your level of motivation and intention. You wake up tired, you occasionally have a window of time during which you are distracted enough to forget how exhausted you are, or even feel energetic for a short time, and then you crash again. If you try to ignore the warning signals and ‘push through’ like a healthy person might, you pay a great price. I call it the ‘crumple and fold’. My eyes glaze over, I can’t think straight or speak very coherently, I become frustrated and sometimes tearful that it has come to this, again, and I am useless and weak until I’ve had a good long sleep. When I am out somewhere and this occurs, it’s time to go. Period. It doesn’t matter where I am, what I’m trying to accomplish, or who I am with. Those closest to me recognize ‘the look’ and get me home as fast as possible. Others likely think I’m a lunatic for the way I sometimes cut and run. I liken it to being on the schedule and mood variations of a toddler. When it’s nap time, it’s nap time; if I try to keep going, I WILL fall apart before your eyes. It really forces me to listen to my body, even when I don’t want to. It is frustrating but also a constant level in accepting what is, working within the challenges we are given, and being grateful for every good moment, hour, and day. 

How do you explain what living with RA is really like to those around you?

I usually don’t try to explain. I don’t like to come across as whining and complaining. I am working on radical acceptance of where I’m at any given time, as well as gratitude for all of the good things and people in my life. When I do try to explain, I tell people that I don’t remember ever not being in pain. I truly don’t. My chronic pain and fatigue began in my teens, many years prior to diagnosis, and the pain has never been limited to my joints. It became more acute and located in my joints in the few years prior to my diagnosis in 2010. But pain and I go way back. Fatigue has also always seemed to be part of who I am. My parents have photos of me asleep in the most unlikely of places, often in what looks like the aftermath of a crumple and fold—“maybe I’ll just have one more bite of th....“ PLUNK. She’s down! I also explain that I am always tired, wake up unrefreshed, feel ready to go back to bed by 10:30 am most days, and at some point can no longer push through and must rest as I literally can’t do anything else. I explain that I have many fewer productive hours in a day than the average healthy person, and I have to constantly prioritize and let things go. This is very frustrating for a former type A high achiever. It is hard not to sometimes feel like I’m not doing, producing, or accomplishing enough. I explain that this is why I’m not on the PAC, not working, not volunteering, and not often as social as I would like to be. Just the regular day-to-day necessities that most people fit in ‘between the cracks’ (activities of daily living) can take everything I’ve got to give in a day and more. This is also why I’m not working outside of the home and may not be able to again. When I’m asked whether I’m ‘better yet’ or when I’ll be going back to work, it is hard not to feel like I’ve failed. RA is Chronic. This means it is treatable and manageable (not for all, but for some, including me), but it is yet to be cureable. Because it can be invisible, this seems difficult for those who don’t live with it to understand. I can have a good day, week, or even month. But I never know when it will end and the inevitable crash will occur. Most people I know who have a chronic illness wish with all their might that they were able to do more and be more productive. We have to find our fulfilment and self-worth in ways other than the usual indicia of success. Being loved and appreciated for who we are regardless of our limitations, and accepted at whatever level of productivity we’re able to manage on any given day, is priceless. 

For those who don't know, RA may be confusing. What do you need people to know about RA and how it is to live with it?

I need people to understand that it isn’t a vacation or a free pass. I would much rather have more energy, less pain and fewer symptoms, and be in a position to do more. I would have liked to continue my career, but won’t push myself to do so at the expense of my kids and my health. I would like to have a perfectly kept house and do more home cooking, decorating, entertaining, and creating. People with chronic illness are not lazy or taking advantage of the situation. Most are doing the absolute best we can with what we have to work with, and pray for those good days when we are able to accomplish more. We often worry that others will misunderstand or judge. I feel terrible about having to cancel plans when I don’t feel up to going out. I feel guilty for the things I’m sometimes unable to do with and for my children. And last but not least, when I do open up and share the details, it is to increase understanding and awareness, not to get sympathy or to complain. I do count my blessings and I know things could always be way worse.