I have had conversations recently with a few women my age who have RA. Our experiences in terms of pregnancy counseling have largely been the same. We became ill at a time in our lives when having children really wasn’t seriously on the radar yet – young twentysomethings who had a lot of other plans before settling down and having kids.
And unlike young women who receive cancer diagnoses and are immediately told to freeze their eggs before they start treatment, if they are planning to have kids, those of us with RA – despite being on medications often times that are just as toxic – are not told to do anything similar, or anything at all, in regards to our future fertility and children.
There are examples of women with lupus getting pregnant that I can think of, but largely none that I can really think of with RA.
Clearly there’s a gap here that needs to be filled. And that gap is filled by the book “Arthritis, Pregnancy, and the Path to Parenthood” by Suzie Edward May.
I’ve decided to split this discussion into two separate posts – one about my own feelings and experiences in this regard and one specifically about the book – because I did not want my personal experiences to overshadow the thoughts, opinions, and experiences of Suzie, who is a woman with RA who has had two successful pregnancies.
Anyway, healthy moms can read about pregnancy as it happens.
But for chronically ill moms, especially those with arthritis, we can’t read about it as it happens because there is so much that goes into pregnancy BEFORE actually becoming pregnant.
And so many books on pregnancy, I would imagine, are written assuming that the mother is healthy, and doesn’t take into account the unique situations of those who are not (and those who are not yet pregnant).
While we can’t read about our illnesses before we have them, we can read about things that we have slightly more control over, like the timing of a pregnancy, and everything that goes into it.
I have been frustrated because my rheumatologist largely refuses to talk about pregnancy until it is no longer “hypothetical.” Well doctor, if pregnancy is in my five year plan, is it really “hypothetical” anymore?
I think not.
That’s why, when I find a new rheumatologist when I move at the end of this summer, this is one of the first topics I want to discuss.
I have wondered for awhile whether the goal is to be on meds, get as healthy as possible, and then get off of them to get pregnant, or simply work to get off meds to get pregnant. Maybe these are different sides of the same coin, but because I’m not sure, I want and need answers.
I think that this silence on the part of doctors is particularly telling. And I think it can have very negative consequences. As I said earlier, to this point, I can’t really think of many examples of RA and pregnancy. But there are examples of women with lupus having babies, such as Sara Gorman and Christine Miserandino, and others in the chronic illness blogging community, such as Laurie Edwards and Kerri Morrone Sparling, who chronicled their experiences with chronic illness and pregnancy. These are great examples. But when you don’t see or hear about women with RA getting pregnant, you might think it’s not possible at all. Or that it’s something that doctors discourage. If it’s really a safety issue, that’s one thing. But if it’s lack of knowledge or judgment, that’s another, and it’s not right.
Pretty much all I knew about RA and pregnancy prior to reading Suzie’s book is that I will have to basically be off of all meds other than steroids – and will have to be off of meds, depending on the type, for between three months and a year before trying to conceive – and that I will add a high-risk obstetrician to my medical team. That’s it. And in reality, that is not it. There is so much more to know and think about, but my knowledge is lacking and so is my rheumatologist’s.
For instance, it’s been hard for me to even fathom going off of meds. How will I function without them? “Arthritis, Pregnancy, and the Path to Parenthood” answers this question and many more with a combination of personal experience and interviews with others with arthritis.
Stay tuned for my interview with Suzie Edward May, author of “Arthritis, Pregnancy, and the Path to Parenthood.”