Shortly after a diagnosis of Juvenile Idiopathic Arthritis (JIA) at age 14, I can recall a brief conversation with my pediatric rheumatologist about the side effects of taking Methotrexate - a medication that is known to cause birth defects. I was not too worried at the time — since having a child was the last thing on my mind — but in retrospect, this was an important conversation.
Fast forward to my mid twenties and I started thinking about having children and what was involved. My journey to parenthood had begun. A health care provider advised “I needed a strong partner” and this affected my confidence. Am I really capable of managing parenting and inflammatory arthritis? People asked – and still ask – whether I will pass JIA on to my children.
It is hard to hear all of this and make a decision that is right for you. I always wanted to be a parent and yet others felt the need to make judgments on what I was capable of doing (by the way – I adapted everything, just like I did since diagnosis!).
These firsthand experiences inspired a series of projects to support people with rheumatic diseases. In my role with the Canadian Arthritis Patient Alliance (CAPA), patient resources were developed to guide people through pregnancy and parenting. Pay attention to the resource about medication use during pregnancy as this “special population” is studied after a medication is on the market so the research evidence is less comprehensive. I also realized that pregnancy conversations were coming too late. We needed to talk with our health care providers about sexual health well before we even considered pregnancy.
What if we made having conversations about sexual health a normal part of our discussions?
CAPA and the Canadian Spondylitis Association, Canadian Association of Psoriasis Patients, and Canadian Psoriasis Network launched the first-ever report of its kind in Canada that looks at the needs and experiences of women+ with inflammatory arthritis, psoriatic, and rheumatic diseases across life stages. Drawing on the contributions of over 400 participants, the report explores a variety of topics important to women+ with these conditions including contraception, sexual health, family planning considerations, parenting, and menopause. Key findings of the report include:
Over 60% of participants can discuss sexual health with their healthcare provider but only 48% feel comfortable doing so.
Over 60% of participants do not have enough information about sexual health and the impact of their condition(s). Only 33% of participants have enough information about the impact of their condition(s) on their sex life.
Less than half (45%) of all participants feel that their healthcare provider provided adequate information about the impact of their medication(s) on their ability to conceive.
Under 40% of participants feel they have enough information about the impact of their condition(s) and medication(s) on their fertility.
We also made recommendations, such as developing evidence-based patient resources about sexual and reproductive health. Additionally, we recommended that healthcare providers should engage in early and ongoing discussions about sexual and reproductive health and the impact of medications on fertility and pregnancy.
For the time being, learn what you can about sexual and reproductive health so you can play an active part in your care and in planning your future. Start a conversation with your health care provider about sex well before considering pregnancy. We know it’s difficult to bare it all but let’s talk about sex and the earlier you do this, the better.
Comments