At 34, I shouldn’t feel like I am in my 70s, but I do. I have learned to hide this disease really well despite how sometimes I have to drag myself around. This morning I had to a business appointment, but prior to that, I had to head out to the local library to pick up a book for my son (The Lightening Thief) and a few books for my upcoming paper on human rights. At 9 a.m., you would think I had plenty of time to get my body moving, but I could barely make it up the steps to the second floor of the library. Then, after viewing the electronic catalog, I could barely make it a few feet to the reference section. By the time 10 a.m. rolled around, I was able to make it in to my business appointment with little discomfort and I was able to conduct that meeting with confidence.
Somewhere between leaving my appointment and getting to work, the realization hit me that I couldn’t hide my condition forever, and that my success was hindered because of this disease. It is a frustrating roller coaster of emotions. I want to believe that winter is upon us and thus, this is the reason I feel more in pain than I did a year ago, but I know that while this may be true on some level, I am also getting worse.
And damn. that rollercoaster. This video says it all. Thank you RA Guy. Every time, I watch this video, I feel sick to my stomach so if you have a sensitive stomach, YOU HAVE BEEN WARNED.
The brain fog can be very consuming and the inability to focus can be detrimental to a person’s career. I do not know when I am supposed to say to an employer “I have RA and I need you to understand.” My current employers know that I have RA, but because I usually conduct myself in way that hides how much I am struggling, it is an issue that is accumulating dust. In other words, my employers think is it a non-issue. What about potential employers? Here I am applying for a position that more consistent with my skills and that would be more challenging than the position I am currently in, and I, again, hide my condition, because I need to. RA isn’t a disability unless it is visable and in my case, it is not.
Most 34 year old mothers are chasing after their children and I doze off on the couch while my ten year old is telling him about his day. My marriage has suffered because this disease consumes a lot of time and I really have no energy after a long day to think about making time for my marriage. Moreover, I feel like my ten year old has taken on more responsibility than a ten year old should. Then, there is my eighteen month old who will never have a healthy mother. At least my ten year old knew me when I was healthy. Dwelling on this disease is part of dealing with the grief and quite often, the grief does consume you, and like it or not, we all need our pity parties.
In the words of Garth Brooks, “I am much too young to feel too damn old.”
Sometimes, I have this silly fantasy that my doctor tells me they made a mistake and what I have an infection that can easily be cured with antibiotics. Other times, I accept the reality of this disease, have my pity party and move on. Today has definitely been a tiring day and, to everyone who I offended today and was rude to, my apologies.