Catch-22

I was diagnosed with rheumatoid arthritis when I was twenty-five years old. Over the past five years I’ve been working hard to stay optimistic, to keep looking forward, and to not let RA stop me from achieving my goals. Whenever possible, I like to use my experiences to make a positive impact on the lives of other people who suffer from arthritis. My family has even made raising awareness about arthritis part of our lifestyle. We raise funds and volunteer regularly with the Arthritis Foundation and I write about arthritis on several different websites. I always try to turn my lemons into lemonade.

But that doesn’t mean my life is always sweet. Living with RA is a complicated balancing act, and reminders of this fact can often feel quite discouraging. For example, I was very excited to be given the opportunity to write for RheumatoidArthritis.net. It seems like the perfect platform to connect with the arthritis community and try to make a difference. But, almost as soon as I agreed to write for this website, my RA flared badly and my hands became so painful it was difficult and uncomfortable to type.

It’s was a catch-22: I had been given the opportunity to write for this website because of my RA, but it was my RA that was making it physically difficult for me to write. What was I supposed to do? Pass on the opportunity? Write even though it hurt?

In this instance I obviously chose the latter, and I’m glad that I did. Because I’m sure I’m not the only person living with RA who has experienced these catch-22 situations, where I feel trapped by a paradoxical set of circumstances and forced to make a decision where it feels like I lose either way. I’ve been faced with dozens of these decisions over the past five years.

For example, I know that losing some weight would help reduce the strain on my joints. In fact, research has shown that for every pound of body weight lost there is a four-pound reduction in knee joint stress. But joint pain can make exercising a challenge, and some of the drugs used to treat RA, like prednisone, can actually cause weight gain. So what do I do? Take the prednisone to reduce the joint pain so that I can exercise even though it will make me gain weight? Or skip the prednisone and try to exercise despite the uncontrolled joint pain?

Pregnancy is yet another RA paradox. Many women experience remission while pregnant, so it is possible to carry a baby without experiencing extreme joint pain from RA. But, as soon as the baby is born, RA is likely to return with increased strength, making it very difficult to care for a newborn. And, since the majority of medications used to treat RA are not safe to take while breastfeeding, as a vulnerable new mother I was faced with another difficult choice. Do I breastfeed so I can bond with my son and give him what I feel is the healthiest start to life, even if it means my RA will flare to the point where I can no longer hold him? Or do I go back on my RA medications and give him formula, even if I believe that breast is best, so that I can care for him in other ways?

Sometimes it feels like these lose-lose decisions are endless. Do I take the biologic even though it will suppress my immune system and make me more susceptible to illness and infection? Do I take the medication that causes insomnia and increased blood pressure, even though it will require additional medications to combat those side effects? Do I tell my boss about the limitations my arthritis might place on me in the workplace even though it may cause him to discriminate against me? Do I dance through my wedding reception even though it may cause me to need a wheelchair on my honeymoon?

These decisions are difficult and often heart wrenching to make, and there is no easy or seemingly right way to make them. The only thing I have found that helps is to share my experiences and get support from people who understand. That is why websites like RheumatoidArthritis.Net are so important – so we can support each other when RA presents us with yet another catch-22.

We don’t have to face it alone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • elisa
    5 years ago

    I myself am facing the breastfeeding catch 22. I am currently on a 5mg dose of prednisone. I am now almost three months post pregnancy. I set my goal to breastfeed for 6 months and pump and store as much as possible. I realize I am not going to be able to store 6 months worth of milk to get my son through a year. The thought of giving my son formula just leaves me in tears. I just hate how limited my options are. Can I ask what decision you ended up making regarding your child? I’m at a loss because I am also on the more severe end of the RA spectrum, but I managed to breastfeed my first son for 14 months. I have such guilt over the thought of not being able to do the same for my second baby boy. UGH.RA.

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Elisa – I’m so sorry to hear you are having to face a painful decision about breastfeeding. I want you to know that I completely understand your pain – I think the decision to stop breastfeeding my son was perhaps the most difficult one I have been faced with since being diagnosed with RA. In fact, my son is now 18months but it still makes me want to cry sometimes when I think about it, because breastfeeding is such an important emotional bond – so much more than just feeding your baby.

    I was able to breastfeed my son for three months, and the breastfeeding was going fantastically and I was producing like a cow! But because my RA is also on the severe side of the spectrum, after three months off my RA medications I reached a point where I literally could not pick up or hold my own baby. It was at that point I decided that it would be better for him – and our family as a whole – if I stopped breastfeeding. Since he was my first baby and I had a lot of help, I basically did nothing but feed and pump for those first three months – by the time I stopped I had three gallons of breast milk in the freezer. So my son got at least some breast milk for a few additional months. I think it was the right decision, but I don’t think that made it any easier to make.

    I can’t imagine the guilt over comparing what you were able to do with your first child to what you are considering your second – and I know it is something I will have to face myself one day. I would say that I think it is important to keep in mind, though, that the decision that you make for your second child also affects your first – if you keep breastfeeding and your RA flares it will affect your ability to be a mom to your first. Motherhood is full of horrible compromises that way. ~;o)

    I think there needs to be more information and support about breastfeeding and RA – so I am planning some articles for RheumatoidArthritis.net on the subject that I will post soon. In the meantime, you can read more about my story at my blog if you are interested: http://www.fromthispointforward.com/2012/09/the-last-time.html

    Hang in there. And know that you are an amazing woman for mothering two children while dealing with RA, no matter what decision you make regarding breastfeeding.

  • Melissa Davenport
    6 years ago

    As I was reading this post, I was thinking of you, Mariah and then, to my surprise, I get to the end and see you wrote it! I guess that’s why I thought of you as I read it. 🙂

    Very lovely post. Good job. And may I suggest the Dragon Naturally software? If you think typing will be a continual problem, I hear others love it (I haven’t used it myself).

  • Mariah Z. Leach moderator author
    6 years ago

    Haha – how very funny! Glad you found me here! I have experimented with dictation software. It can be useful for some situations. For example, I used it for taking notes on my reading during law school. However, seeing that writing is my job, when I am trying to write something coherent where grammar matters I have found it rather difficult and more time consuming to translate from my fingers to my mouth. I’m sure it would get better with practice so it’s always an option if my hands get really bad! Thanks for the suggestion!

  • Annie K
    6 years ago

    Mariah – Thank you for your article. It is always uplifting for me when I read about someone else who is struggling with RA too. Not that I like hearing that someone else is struggling. It’s just nice to know that I am not alone. Everyday is a challenge. Most days are filled with catch-22 decisions. I am looking forward to more of your articles. Wishing you a pain free day!

  • Mariah Z. Leach moderator author
    6 years ago

    Knowing that I am not alone is one of the major factors in staying positive. ~;o) Wishing you a pain free day as well!

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