10 Things I Wish You Knew About My Battle With Rheumatoid Arthritis
How do you explain something to a person who has never experienced it? How do they understand what rheumatoid arthritis feels like? It is hard for any of us to understand the depth of another’s struggle if we have not walked that path ourselves, but when we begin to see just a small part of what another is dealing with, it can help us as we work to help them.
I was asked by someone what it was like to have rheumatoid arthritis and what I wish others knew and understood about this disease. I thought about it and realized it was harder to describe than I thought. As I began to jot down ideas, I realized how hard it is for even me to wrap my mind around this disease and all the “little things” that come along with it.
The physical aspects of rheumatoid arthritis are just a part of this battle. So much of the battle I face is in my mind and emotions. In some ways, this part of the disease can be as much of a challenge as the physical struggle. As I considered how to help others understand, these 10 things stood out to me:
1. Rheumatoid arthritis is more than just aches and pains.
So many things are affected that many do not ever see -– anxiety/depression, generalized pain, fatigue, difficulty sleeping, slow movement, stiffness, stress, insecurities, and so much more. Even when you can’t see the “pain” there is a battle raging in our bodies.
2. I don’t remember a day without rheumatoid arthritis pain.
I have been in some form of pain from rheumatoid arthritis every day for the last 31 years of my life. There is never a time when I am pain-free — even on good days, there is still some level of pain. I might have less pain one day, but there is still the “white noise” of constant pain in my body. In fact, I cannot remember what a day without pain feels like.
3. Rheumatoid arthritis is always there.
There are dozens of constant reminders, besides the pain, each moment that I have RA, and there is nothing I can do to change it. There is always one more pill, one more operation, one more thing to remind me of my struggle. There is never a time I forget about having this.
4. I never know from day to day what I can do, or even from one minute to the next.
This can change moment by moment. Each moment, I never know who is going to show up – the man who can do stuff, or the man who cannot. I never know which it will be, or which plans or activities I can keep. I never know who I will let down or what expectations I will not be able to fulfill. If you are frustrated by this, imagine how I feel. The uncertainty can drive me up a wall some days.
5. Even good days with rheumatoid arthritis are still hard because there is so much you can’t see.
Even on days when I am doing “well” everything is still a struggle and takes more effort. Very few things are simple, and most things take extra effort — even the simple tasks. Even when I am feeling pretty good, there is pain, stiffness, or any number of other symptoms.
6. It is hard on my family — my wife, kids, sister, parents, and many more loved ones.
Yes, I am fighting this battle, but they are hurting and battling rheumatoid arthritis just as much as I am. It is hard, especially for my wife and kids, because just like me, they do not get a break, and must watch me suffer and decline. Just like me, they must deal with all sorts of emotions and the extra “workload” to make up for what I sometimes cannot do.
7. I’m often more frustrated than I want to be or realize.
On these days, it is hard to see a bright spot. All I can see is that “bad stuff,” and on those days there is no silver lining. When I reach this point and I am frustrated, angry, or want to give up and throw in the towel, the frustration overflows and usually ends up hurting someone I care about – and I hate myself for it. On those days I am just very tired of fighting and frustrated and I am feeling discouraged. Know that I am sorry, and it hurts me to see what my struggle is doing to another.
8. There is not an end in sight.
Unfortunately, currently, there is no miracle cure for rheumatoid arthritis. Sure, we might be able to get RA into remission, but it is progressive and most likely will be a bigger struggle the longer I have it. All we can do is slow it down and control the symptoms with medicines. I most likely will never get better, and I will get worse — and that is a hard thought to deal with, which is why the next thing is so hard.
9. The mental and emotional battle is sometimes more difficult than the physical.
There is grief, more than I even realized, and sometimes I just need to cry. There is self-doubt. There is frustration. There is a never-ending battle raging in my mind. I am mourning the life I thought I would have – the dreams for myself and for my family – the things I can no longer do. There is always a little voice in my head now questioning everything, and the doubt it causes can be enormous.
10. I and my family need you.
Sometimes, it can be very lonely, especially battling rheumatoid arthritis at 20, or 30, or 40, or now at 46. My family and I many times feel very alone, simply because we know no one near us, and very few even online battling rheumatoid arthritis. Sometimes, we do feel like no one understands, and that can be very isolating. When we have people, even if they are not walking the same path, who are just there for us, it makes all the difference.
These are just some of the things that make rheumatoid arthritis challenging. Day to day you never know what you are going to face, which is why we must take life with rheumatoid arthritis one day at a time. Fighting RA is hard, but it helps to have people around us who work to understand our struggle and help us along the way. I am thankful to have many of these people in my life. Without you helping us, we would not make it, so even when you don’t think I am thankful, please know that I am, and that your love and care give me the strength to keep fighting and take that next step.
Getty art by Werner Images.