Parenting under any circumstances is a difficult and weighty responsibility for anyone. Imagine if you have to deal with a chronic illness at the same time! What if you want to have a baby but are unsure as to whether it is a good idea, due to your illness? Myalgic Encephalomyelitis (M.E.), often referred to as Chronic Fatigue Syndrome (CFS), is a long-term (chronic) illness affecting men, women and children of all ages from about 2 yrs old. People from all different walks of life have suffered under this life-altering illness. It is estimated that around 250,000 people in the UK alone have M.E.
Chances are that you either know someone or even have someone in your family, suffering from this mysterious sickness.
If you are one of the unlucky people with M.E. you may have been struck down before you’ve had a chance to do any of the things you had planned to do with your life. You might have had a plan to have children, run your own business, go to university, succeed in your chosen career or even run the London marathon for charity. Suddenly your world is turned upside down and before you know it you are barely able to feed yourself or carry out your daily toilet. Even if you are well enough to do those things you may feel like you are living life in a drug-filled haze, struggling to concentrate, read or perform other hitherto normal mental or physical activities.
I know this from experience. My partner has it and M.E. has changed our lives significantly. This happened when our youngest was about 6 yrs old. Caring for three children is no piece of cake under any circumstances. I’d like to think that we rose to the occasion and have not done too bad a job under the circumstances, but I can’t lie and say it hasn’t been a struggle. There are many rewards to parenthood and I can say without question that I am glad we have children and I love them all more than life itself. I’m not sure that I would like to recommend parenting whilst simultaneously coping with a chronic illness, but I wouldn’t discourage it either. That will be your decision to make.
So what can sufferers of M.E. expect if they want to get pregnant?
“Action For M.E.” is a leading UK charity campaigning for more research and offering support for ME sufferers and their carers. According to Action for M.E.’s principal medical adviser, Professor Tony Pinching. “Some ask if CFS/M.E. can be passed on. Surprisingly few patients – female or male – consider whether they are ready to manage to look after a young child. Yet this is the critical issue!”
One of the main things an ME sufferer should bear in mind is the huge amount of energy caring for a child, especially a newborn, uses. Most of ME patients have to budget their energy each day and every week. Demands upon parents from a newborn are considerable. Is your partner able to share these demands? Will you be able to keep up without causing a major relapse? What if your baby is a light sleeper and wakes up several times a night? Would your medication adversely affect the development of your unborn child? These are all serious questions that merit consideration. Now don’t get me wrong, I’m not trying to discourage anyone. Many people with ME are parents and manage to succeed in raising good children in a warm and loving environment. But every ME patient is different so each situation should be assessed uniquely.
Conceiving with ME is usually no more difficult than without. But pace yourself! There is such a thing as too much sex, which can place unusually high demands upon the patient’s energy levels. Once pregnant, energy levels may decrease during the first few months, giving rise to more fatigue and morning sickness than normal. However, there is no increased risk of caesarian section birth. In fact, your energy levels may even rise during pregnancy. But this cannot be expected in every case. The opposite can just as easily happen.
Will there be an increased risk of the child having ME/CFS? According to Action For ME, “Although CFS/M.E. does seem to be slightly more common in genetically related family members, it is not genetically determined. If the statistical chance of a child getting CFS/M.E. later in life is slightly higher, this is not usually at a level that would affect the decision whether or not to go ahead.”
Delivery of the baby will usually be much the same as any other, but it is advisable to plan ahead for pain-killing purposes. Recovery afterwards might take a little longer than normal though.
For more comprehensive advice about getting pregnant with ME, it is recommended that you check out the official Action For ME website.