Saturday, November 14, 2009

From Daughter to Disabled Chic in 6 Easy Words

I will never forget the most hurtful conversation I ever had with my father. In two minutes he managed to change the course of our entire relationship.

Before my RA, my father and I were two peas in a pod. We, each of us, had an overabundance of energy. We ran in the mornings, worked all day, and then I taught swim classes part-time at night, he taught karate. In the evenings, I’d head out dancing with my friends. He went home, walked the dog and went to bed. HA – at least I beat him after 9pm.

But everything changed when I started showing symptoms of RA. So now… instead of the two of us going running in the mornings, he goes by himself. I haven’t worked in a while, though I am trying to get back to it. There are so many things I’ve been forced to change about my lifestyle...the list goes on.

So one day I tried opening up to my father about my frustrations concerning my new limitations. He began telling me something about having the will to make things happen. I told him, “Who are you talking to? I’m the girl who went to college with nothing. I found scholarships, landed internships. I made everything happen that I could. There is not anything in my life that I did not have to break my back to acquire.

I went on to explain that “It is a different thing altogether when you are ROBBED of your physical abilities. You wouldn’t tell a cripple man he could will himself to walk if he just tried hard enough.”

He did not answer, so I pressed, “So tell me, how am I supposed to overcome this disease?”

I did not expect an answer by this part of the conversation; I was simply trying to make a point. And I certainly did not expect the answer he gave.

He said, “That has to come from you.”

I said, “Excuse me? Last time I looked, I did not possess a medical degree.”

He tried to speak carefully, but he knew it was too late, so he just said plainly, “When you get tough enough to deal with the pain, then you’ll know how to handle things.”

I was floored. I hung up and cried for days. Deal with the pain? Are you kidding me? I carried my 14 pound infant son around for 2 years while my shoulders and elbows and wrists SCREAMED at me. I lost 80 pounds of baby and steroid weight by going to the gym 4 times a week and then going home to soak in ice. I even went back to school and sat in 14 hour long classes to earn another degree by alternately popping steroids which made me a haggard mess and pain medicine which begged me to sleep. I earned a 4.0. I am one tough girl. Do NOT think this is a disease for wimps. No sir!

Our relationship has gone swiftly downhill since that call. He did call last year to tell us his new wife has breast cancer. I do feel badly, but having received no compassion from him, there was not much I could say. Until he asked, “How is she going to beat this?”

All I could think to say was, “Oh – that’s going to have to come from her.”

He hung up.


  1. Argh. This reminds me of a conversation I had with my father once. I was feeling so awful one day that I couldn't drive myself to school (an Ivy-league school at which I was earning a doctorate, by the way!) and he ended up being the one available to drive me. So while I sat there in pain, trapped in the car with him, I had to listen to him go on and on about how I couldn't let this illness get in my way, about how I couldn't throw away my brains and my education and my career... and on and on and on. At one point, he said, "Look at Stephen Hawking!" So great, Dad - I'm enough of a perfectionist as it is, and now I have to be STEPHEN HAWKING???

    I stopped trying to talk to him about RA after that.

  2. Remicade Dream,

    How frustrating! Good for you for getting into an ivy league doctorate program!!!

    Lately, I've been pouding my head against the wall trying to walk a fine line between convincing my friends/relative how horrible the disease is verses telling them so much that they don't think I can do ANYTHING. It is so frustrating. My new tag line has become, "I can do anything, just not everything." Meaning, I could work, but I'll have to hire a housekeeper or I could stay home and cook and clean, but I can't do all of it in one week.

    Thanks for all your great comments!

  3. A lot of people in my life do not get it either. My mom is always complaining how I use my condition as an excuse not to help her. Other family members tell me I am negative about my condition because I have accepted it. They (my family members) stll think I will get better. The damage is irreversable. All I want is to raise my children. Because I have accepted my disease does not mean that I have given up. It means that I keep trying. However, it does not mean that I should believe that the damage is reversable. It means that I should focus on the present.

  4. Dear Living It Loving It,

    Next time your relatives try to give you crap, you need to turn it around on them. Say, "Have you actually taken any time to research my disease? Because if you had just four seconds to google "rheumatoid arthritis" in order to find out what your daughter/neice/etc. is dealing with, you'll see that I'm doing remarkalby well!" ;)

  5. One of the reasons (at least in my humble opinion) that it's so hard for friends and relatives (especially relatives) to understand is that RA doesn't always strike the same way from day to day. For instance, today my hands hurt, but it's bearable, so they haven't stopped me from doing things. They HAVE made me alter the WAY I do things, and they even made me ask hubby to prep potatoes for tonight's soup. He also got to cart in firewood. That was beyond me.

    But the day before yesterday I could hardly do anything with my hands. They were very painful; I didn't want to move them at all. I posted to my blog, then tucked them into heat mits and called it a day.

    This variability makes it hard, I think, for people to understand the disease. And it makes them suspicious as to whether we really HAVE something that we claim is so debilitating and painful. Unless we are confined to a wheelchair or wearing splints on our wrists and hands or have distorted, lumpy fingers, they can't quite believe our story. That's the sadness that's so central to having RA. It's mostly invisible.

    I've had my parents say these sorts of things to me, as well. If I was just stronger, or less lazy, or more determined; if I walked more, or exercised more, surely I'd be just fine.


    Thanks for posting this, SB. It's another well-written thought-provoker.


  6. I hate that for you- what a horrible way for him to respond. I feel really lucky because my family (keep in mind most of them are doctors so definitely not a typical family) has always been positive, understanding, and supportive. I have NOT been that lucky in the friend dept. If I hear one more time " why are you being so lame?" or the worst, when I was at dinner and felt nauseous because of mtx "can't she just enjoy anything?", I may very well lose it and cuss someone.

    I love , love, love your blog!!!

  7.'re too sweet!

    Rheuma blog - You are exactly right. It is hard for them to understand due to the erratic day to day nature of the disease. I will try to keep that in mind.

    All Flared Up - There's an answer I hadn't thought of - send my family to medical school! ;)
    And your friends - I hate to say it, but I seem to do better with the friends I've met since the RA since they see me as I am NOW and don't keep expecting the "Old Me" to come back. Does that make sense? One of my new friends did tell me this past year that she had doubted how ill I was b/c to her I seemed so fit and healthy...until the day she walked into my Master bedroom and saw the 62 prescription bottles lining my bookcase. HA! I guess that would be a shock to mose people. But sometimes you have to wake people up like that. You have to show them the ugly side of the RA, so they can appreciate what you do to get by. But of course, you only do this with people who are worth the effort!!!

    And finally, it is funny you popped by b/c I was reading your blog all day today! You crack me up. :)

    I am really liking reading all of you guys!!!

  8. You know- I am blessed with a very sympathetic and understanding husband and family. I KNOW how blessed I am. Even they don't always "get" it. Sometimes it does take something visual to make it click.

    This weekend- we were driving home from a lovely dinner and I was feeling great when out of the blue I got a stabbing pain in my neck. By the time I got home and changed into pajamas I needed heat on my neck, shoulders, lower back. I did what I had to do and didn't say too much about it- but it was good for my husband to see how quickly it comes on and goes from okay to bad.

    Last night- we were on video chat with my best friend and he told her "You should have seen it. It was so bad. All I know is that I am glad it isn't me because I couldn't handle it." Then he gave me a kiss on the head (aawwwww)and wandered away. It was a wake-up call for him and it made me grateful that he got to see first hand how the fibro comes on instead of me waking up with it or being already in pain when he comes home from work.

  9. Good for you, Jules! And good for your hubby!!!

  10. I love your blog. I love the raw honesty of it. When my first rheumy who was an idiot (grins) thought I had fibromyalgia even when tests showed inflammation and my joints were family was ok but still didnt understand what I was going through. When I saw a smart rheumy (grins) and was diagnosed with family completely changed...They were very sympathetic. They have known people with RA....except one sister and she looked it up online and cried. They still dont understand completely and how could they? I didnt understand what people really go through when they were diagnosed with something like this. But, empathy is very important and if it is your family you should try to be understanding and empathetic. RA is so misunderstood. If I dont feel up to doing something I just say I dont feel like it today. I make no apologies. I didnt choose this and I cant help that I am not the same I was before. If they dont understand then thats their problem...I have more important things to worry about like working and taking care of my daughter. Some days those things are all I have the energy for. We didnt choose this...we were given this. We can only do the best we can! keep up the great blogging...i love it! :)

  11. Thanks Leslie! I will. Thanks for your inspiration! You rock. I need to adopt your attitude more. :)

  12. What a hurtful thing to say.

    I've been lucky, I suppose, because I've had RA since I was two years old and my parents were forced to understand it years before I even needed to myself.

    Where I have experienced that total lack of understanding and compassion has been with boyfriends. I've had two in particular who thought, first of all, that their problems were much worse and so mine didn't matter, and second of all, that RA really isn't so bad after all and I was just making a big deal out of it. Needless to say, they are both now ex-boyfriends.

  13. It's sad that often the ones closest to you are the ones that hurt you the worst. You should be able to count on family when you need them. My parents do not fully understand RA but are sympathetic ... I just take it and go on, but I don't want anyone's sympathy. For what it's worth, I would have done the same thing you did, good job girl.

  14. Oh, honey. I ache for you. And for him. :(

  15. Helen, I'm with you. I was dx'ed at age 5 and I had no greater cheerleaders than my parents. In fact I often worried them b/c they they thought I was trying to do too much.

    I think RA is much, much tougher on those who are dx'ed at a late age rather than very young like we were. One minute you're barrelling along living a normal life, then BAM, you run into a wall and everything changes. I wouldn't wish it on my worse enemy.

  16. WOW. I wonder why the most insensitive comments seem to come from the people we think would be our greatest supporters? I was dx'ed almost 4 years ago; about a year into everything, my sister made some really negative comments to me, which then led to a battle via myspace (of all places). I finally had to delete her from my list of "friends"! My own sister! Now, the tide has turned...she is pretty sure that she has RA, too, but her dr has only diagnosed her with fibromyalgia. She has tried to mend our relationship, but even now continues to make snide comments about me when I don't do things for her. She has 3 children, ages 3 and under, and is always looking for someone to "babysit" for her. I was on medical leave from work this summer for 8 weeks and she was mad because I didn't offer to keep her kids! Hello?! I could barely take care of myself, much less my own son!

    I know that it's little comfort, but please know that you have a lot of people out here thinking about you and that you are not alone in what you are going through. I really don't know where I would be if it weren't for being able to vent and rant with others like myself when I'm feeling down...and I know that you probably feel the same way...