I’m an oddity. I know. Those of you who have had real life interactions with me know this is not news, but I’m not referring to my little quirks, personality differences, or weird sense of humor though all of those hold true. I am talking about my involvement in the RAD/Rheum community and my role as Kim’s “caregiver”. While I have no specific numbers of how many active “caregivers” there are in the RAD community it is quite clear they are a significant minority. I currently have about seventy people that I follow in the RAD/Rheum community on Twitter. Of those seventy people only two of them are “caregivers”. Everyone else is someone who has been diagnosed with RAD. The RAD blogs and RA Warrior’s Facebook page are full of patients who write, and cope, and support each other, but the “caregivers”??? There isn’t much involvement from them.
Before I go any further, this needs to be said. This post is not about me promoting myself. I am not a hero in any way. I am far, far removed from being the perfect husband. The reality is that I’m quite often a jerk and that my actions on many occasions give Kim all the justification she needs to leave me. Grace prevents her from kicking me out and I mean that very sincerely. This post has nothing to do with her and I having everything figured out. So what is it about?
Ever since Kim was diagnosed with RAD I have been involved in the RAD/Rheum community online. Since my first few steps into the pool where patient advocacy and social media swirl together I have been welcomed with open arms. From the beginning I was welcomed as a “caregiver” and at first I didn’t understand why that was so important to those within the community, but after being involved for a while and receiving messages and comments I understand why I’m seen as different. It’s because I am and that is what makes me upset.
May I speak bluntly to those of you who live with someone who has RAD? Specifically I’m addressing this to the husbands and boyfriends of those who have RAD. Frankly, it’s time for most of you to grow up. I say that because since the day my wife and I unwillingly became a part of the rheumatoid arthritis community I have been contacted by individuals saying things like, “My husband doesn’t understand my pain and tells me to suck it up.” or, “He tells me it’s mind over matter.” or, “He’s never been to a doctor’s appointment with me.” or, “He tells me I shouldn’t lay around all day, as if I have a choice.” and I could go on and on. The impetus for this specific post was the lady who recently wrote me to say that her husband has yet to read one single bit of information about her RAD, but will spend days researching what tires to put on his car. And to that I say, “Grow up and become who you are suppose to be.”
I don’t like being called a “caregiver”. The fact is that Kim is one of the strongest people I know and while there are many things that I do for her because it’s easier on her or because she no longer can do those does not in my mind make me her “caregiver”. To me a “caregiver” is one who helps someone in their last days before they die. A friend from the RAD/Rheum community calls himself a “lovegiver“. I understand and appreciate his thought behind it and even would encourage others to use it as well as they see fit, but for me there is another title I find more fitting.
I am Kim’s husband. I’m not her “caregiver” though I understand why people use the word. However, my role and who I was prior to her diagnosis didn’t change any after we found out she had RAD. On a fairly warm August day almost 20 years ago we vowed for better or for worse, in sickness and in health, and we both meant it. That doesn’t mean that those vows haven’t been tested and it doesn’t mean that we haven’t had moments where we’ve almost walked away from each other. What it does mean is that I made a covenant with her and just because she now has an illness does not give me an “out” clause. Have my responsibilities changed? Yes, but my role hasn’t. I was her husband when she was healthy and life was fairly easy. Now that she is sick and life is a hard I still need to be her husband and the reality is that I get to be her husband.
For the husbands and boyfriends out there who have no idea what your mate is going through, I challenge you to learn what love really means. I’m calling you out to realize that love is self-sacrifice. I’m urging you to stop memorizing your favorite ballplayers statistics and instead learn what medications your girlfriend or wife is on and why they take them. Stop pursuing a hobby and devote yourself to her. Instead of grabbing a drink with the guys after work, knock off an hour early and go to an appointment with her. Become who you say you are. If you say you are her husband, than start acting like one. If you say you have a girlfriend, than start acting like you actually care for her. Man up. Own your responsibilities and actually begin to look like the person you say you are. Why? Because you said you would. Because that what those vows meant. Because that is what real love is. Because selflessness devoted to her is worth far more than all the knowledge in the world that you could ever compile about tires, or anything else. Because this is what “loving someone and laying your life down for them” looks like.
So use whatever term you prefer — caregiver, lovegiver, boyfriend, or husband — just actually live out what your title describes.
For further reading and encouragement, I suggest reading the real life example of Muriel and Robertson McQuilkin.