The Obstacles I Didn't Know I Would Face When I Was Diagnosed With Rheumatoid Arthritis

In November, it will be three years since I was first diagnosed with rheumatoid arthritis. I was completely naive then; I didn’t understand that this disease was completely life-changing. Looking back now, I want to shake my former self and tell her to be prepared for all the obstacles ahead. I am disappointed that after all of this time, I feel like nothing has truly helped me to improve.

I am a witness to the fact that people won’t necessarily become more compassionate towards you, either.

My journey has been nothing short of complicated. What began with one specialist doctor and two pills has spiraled into my appointment calendar being completely filled up except for the weekends. I have a primary doctor, rheumatologist, mental health therapist, physical therapist, pain management doctor, and I am newly pursuing a sleep specialist. How I can remember most of the things that each one wants me to do is beyond me.

Besides my unbearable widespread pain, my biggest struggle has been my fatigue. My rheumatologist just cannot understand why it is as awful as it is. Granted, I have Sjogren’s syndrome, fibromyalgia, neck and back pain, and have depression and anxiety in addition to my RA, but even with all of that, he has said that my medications should have helped with my energy levels. For anyone who does not have severe fatigue, I will try my best to put it into words.

Have you ever been in a movie theater and found yourself falling asleep but are fighting it with every ounce of your body? You paid for that ticket and do not want to waste it, right? You feel your head going down and your eyes closing up on you, but you just cannot seem to keep yourself awake. This is a daily event for me. I will be watching TV with my fiancé, and a very sudden wave of tiredness comes over me. I try to switch positions, drink something, pinch my face… anything to stay lively, but I just can’t. It feels like if I cannot close my eyes at that very second that I will die. I promise you I am not being dramatic. There have been times when I have run to my bed because I can feel myself collapsing from pure exhaustion.

 

There is fatigue, and then there is autoimmune fatigue, which plagues me daily. I am so embarrassed when my fiancé can tell the tiredness has set in and asks me if I need to rest. I don’t want to nap every single day for hours, but I have no choice. The people who think coping with chronic illness and not being able to work is fun will never comprehend the struggles we face just to keep ourselves at a functioning level. A trip to the grocery store can have me in my bed for a good two and a half hours.

If anyone questions the legitimacy of you being sick by seeing a pretty picture of you on social media or seeing you doing something remotely fun once in a while, you do not have to prove yourself. What they don’t know is that you going out for a couple of hours equates to hours of resting prior and days of recuperating after. That picture of yourself looking decent was to prove to yourself that you are still there somewhere within.

I don’t think there will ever come a day when people will fully understand or have compassion for those who are ill, but in reality, that doesn’t matter. I am trying to accept this; it is was easier said than done. The most important thing is for you to sympathize with yourself and let yourself know that it is OK to have a crappy, bad day. It is OK to question why this happened to you and why you were challenged. If everyone in your life doesn’t think your diseases are as bad as you portray them to be, then mentally tell yourself that you hold the truth and fight each day for yourself.  When we choose to face the day, we exude the strength within that fighting these illnesses has brought out in us.

Approaching three years, I feel comfortable enough to talk about my health issues. I have developed a sense of advocating for myself, which I never had before. I see the world in a different and more compassionate manner. I do not judge people based on how they look. Although it is a process, you will learn along the way that you have traits within that you never knew existed.

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Thinkstock photo by patronestaff