What does rheumatoid arthritis feel like? I get asked this question a lot and I try to answer to the best of my ability without completely putting someone to sleep or feeling like I am looking for sympathy. I want to be very clear, I have had many “why me” moments and occasionally still do. But, I firmly believe everything in life happens for a reason. Like any autoimmune disease the challenges that you face with it are multifaceted. There isn’t a one size fits all checklist of what you feel like or what you go through and every person is unique. It depends on how well controlled your disease is at the present time. So, what does RA feel like? I have to approach this from several angles. There is pain, fatigue and then the emotional aspect of it and this is just my personal experiences with it.
Pain from RA can either be from flares or from the compounded effects of the disease. For me, most of the pain for me comes from flares. I haven’t had RA very long and I don’t deal with some of complications that others face like joint deformity or permanent joint damage. The best way to nutshell how a flare up feels is that it is the most intense pain I have ever felt. I experienced most of my really bad flares shortly after giving birth to my daughter. During that time, the fluctuating hormones threw the RA into overdrive and it wreaked havoc on my body. I would get up at night to tend to my baby and swear my bones were broken in my hands and feet. I would tell my husband that there was no way I could be in that much pain and something not be broken. I was exhausted, but yet couldn’t sleep because of the pain. I had to go through several prescription cocktails before finally finding some relief. One of the best ways to explain how painful a flare is to someone who hasn’t experienced one is for me to go back to the Mistletoe half-marathon I ran in December 2012. My feet had been flaring and swelling and that was something I had just gotten accustomed to. I honestly didn’t know what it was like to wake up and not be in pain, so it’s just something I dealt with. Usually by miles 2-3 of my runs my feet go numb and I can usually run without a problem. During the half that day they didn’t go numb. At mile 8, I felt a super sharp pain and I said to myself, “well I am going to have a flare up in my left foot today”. Since I was used to the immense pain from a flare up I thought my foot was just starting to flare. So, I kept running and finished the half-marathon even though my foot was getting increasingly worse. It still didn’t feel like a full on flare up though. The pain was bad, but wasn’t “flare up” bad. So, I finished the half in 1:52 and hobbled over to the car. I drove home and threw on my Uggs (Southern girl staple you know!) to go Christmas shopping. My foot was hurting, but still not as bad as a flare up. So I figured I had better get the shopping done because the flare would be in full force by that evening or the next day. After the shopping was done I tried to pull off my shoe in the car and it wouldn’t come off! I couldn’t remove my shoe. It physically wouldn’t come off! I had to get my husband to help me pull my boot off because my foot was so swollen it was stuck. At that time, I saw the bruising and knew what had happened. The sharp pain I felt at mile 8 was my bone breaking. I would later find out at the ER (the next day) that my 2nd metatarsal had completely snapped into two pieces. So, everyone assumes I am super hardcore to run a sub 2 hour half with a completely broken bone. In reality, it was only because I didn’t realize my bone had broken! RA pain is worse than a broken bone. I had spent so much time after pregnancy thinking my bones were broken because of the intense pain that I didn’t even recognize when my foot actually had a broken bone! Flares are intense, unrelenting and show no mercy. There isn’t a position you can move into to ease the pain. The heating pad doesn’t help. OTC pain relievers don’t help. It is just you and time and the pain. And you just hope the flare goes away as quickly as it came on. So that is a flare for me. The bigger joints hurt the most. They will make you feel like you need an ER at times. Smaller joints not as bad, but they definitely make their presence known. When a bigger joint flares you just get the walker out of the closet and try to pretend you are the coolest looking 34 year old ever. I even thought about adding bling to my walker just so the older people at my doctors office would be a little jealous. Hello Kitty stickers and Swarovski crystals would really be a nice touch.
The fatigue is the worst part of RA for me. I am a mom to a small child. She completely depends upon me for everything that she needs and when a fatigue day hits it is everything I can do to fulfill the mom role. I carry a lot of mom guilt because of this. There are some days the fatigue is so bad that I let her watch hours of cartoons and eat whatever junk food she wants just to “survive” the day until my husband gets home. It is brutal. You go from being able to run a marathon to the thought of brushing your teeth makes you want to cry because it is more energy than you can muster. You feel overwhelmed at every question, text, email, request, demand or anything that comes your way. You want to bury yourself under a blanket and not move, but you don’t have that as a choice. I struggle immensely with fatigue days, it is when I feel like my body has forsaken me the most. You lie there almost motionless, trapped inside your own body. The weight of everything around you makes you feel like you won’t make it until the end of the day. But, you have no other choice. I have a baby that needs me, a husband that works long shifts in healthcare, training to do and a household to maintain. I have to fight with everything I have to make it though these days. And some days I do cry, not because I believe it will solve a thing, because I know it won’t, but because I don’t know what else to do. These are the days I need my support system the most. These are the days that patience, understanding, compassion and love is what makes the fight to get through a little easier.
The emotional part of RA is layered. There is the one aspect of your friends, family and loved ones who want to help but don’t quite understand what RA is, or how it works, or how to help. I truly can’t think of anything more encouraging that one of my friends researching what RA is and how it affects my body. It shows me support and understanding and literally makes me want to give someone the biggest hug ever. Most people in this world don’t want sympathy, only understanding. I need my friends to understand why I need to cancel plans, why I can’t open my own water bottle, why I can’t hold your beautiful newborn, why I can’t risk going to your get together because it is flu season. Then there is the frustrating times when you tell someone new that you have RA and they start making suggestions on what you should do. That is the worst. I personally have already given up soda, fast food, milk and I work out 6 days a week (flares and fatigue days willing). So to have a stranger tell you to take Ibuprofen, exercise ,or eat this or don’t eat that, it makes you want to scream. It trivializes the disease. Or to tell me that I could be curing it with a herbal capsule or some type of drink. I assure you that if it was that easy of a solution we would all be “cured”. There is not a one size fits all treatment as doctors don’t even know what triggers RA. There is no cure at the present moment and we all do the best we can to survive the cards we are dealt. What an RA patient needs the absolute most is someone to be there when we need an ear to vent or a shoulder to cry on. Friends, family and loved ones are really the reason we get through the toughest of days, the days we are the most fatigued or the days we are hurting the most. The other emotional part is being completely humbled by the lessons RA has taught me. The pain I went through after pregnancy changed me in many ways. Before RA I never understood why someone would ever take their own life. And after being in that kind of pain for days on end, it made me understand how hard it is to live with chronic pain and fatigue. It made me very empathetic to anyone who suffers so greatly that they believe it is an option to end their life. And unfortunately suicide is a consideration for many RA patients. That is why this blog is so important to me. I want to show others with RA (or anyone that has struggles) that ending your life isn’t the answer. I have been through bad days and I still have them, but I have really amazing days too. It is possible to live out all of your goals and dreams with an autoimmune disease. I may have to make adjustments from time to time, but life is completely worth it. Because when you overcome every obstacle life has thrown at you, it is a victory that you own. You get to look back at everything that challenged you and know that you were stronger, more determined, more stubborn and too fierce to give up on what your heart desired the most. We should all be so blessed to experience that in life. We all have struggles in life and I have always been afraid to put mine out there for fear of being judged, seeking sympathy or viewed as weak, but I realized that can’t help anyone unless I am real, transparent and honest. At this juncture in life I care more about helping others than what people may think of me. I know I couldn’t be the person, or athlete, that I am without a lot of love and support. So, I hope my blog educates, uplifts and offers understanding to anyone that needs it. And truthfully, it has been such a blessing for me to be able to share my struggles along with my victories. Exposing the fact that I do, in fact, need help at times has helped me learn a lot about myself too. I don’t have to do it all alone and that there are others out there just like me. So thank you for being on this journey with me, I am grateful of how blessed I am in life and couldn’t do it without support. I hope this blog finds you happy and well.