by Dr. Vaijayanti Lagoo-Joshi
Sonali, my patient for RA for last 6 months, looked especially worried that day. Sonali, a young dynamic graduate of 22, always looked forward towards her bright prospects. RA almost always affects morale of many patients but Sonali’s expression on that day prompted me to ask her straight away – “What’s eating you nowadays, dear? You seem under tension…” Before she could answer me her mother, who had accompanied her that day, ventured out – “madam we are thinking of her marriage now, she is of the right age. She is good-looking, smart, well-educated but the real and biggest problem is RA! If she confesses about her rheumatoid status the prospective grooms shy away and we consider it unethical to hide this serious fact from her would-be in-laws; it will surely land her in trouble if it gets discovered later! We are in a total soup, don’t see a way out of this situation…”
This changed my perspective – until now, as a doctor, I considered every patient only from a pure physiological standpoint; now I looked at them also from a woman’s psyche and realised that the problems were multi-faceted and their scale was unprecedented.
Let’s start with the ‘scope’ of Rheumatoid Arthritis. It affects all the bodily joints; and i mean ALL – right from small ones like fingers and wrists to bigger ones (elbows and knees). The joints swell, pain, stiffen…and get seriously deformed over time. RA doesn’t differentiate with gender, age, religion, social status, nationality – it can affect anyone and everyone. However women and especially the young once (in the age-group of 20 to 40 years) are more prone to it. The worst problem with a disease like RA is that although it claims the body parts initially its tentacles spread fast, engulfing patient’s state of mind, reducing efficiency…and eventually affects his/her social as well as blood relations and economic in the worst ways!!
The young girls (girls barely into their teens, less than 16 years of age) getting affected with RA many times suffer from joint pains and swellings and simple jobs of life – walking to school, writing, playing with peers – become a burden. This naturally plays negatively on their scholastic progress. Due to the limitations imposed on physical activities their personalities don’t bloom like they should and this can make them lonely. They have to have heavy medications at such a tender age and also have to undergo regular checkups. This, and the side-effects of the drugs make them susceptible to depression. Considering the rural Indian social scenario these RA-affected young girls are neglected just because they are females and don’t get proper medical attention on time, leaving the doors open for RA to spread.
The importance of education has filtered to many social strata and girls do get to learn and mould their future; but the youngsters suffering from RA start losing their overall confidence since they face a hectic schedule and start getting doubts whether they’d be able to cope with studies and / or job etc. In fact RA binds its patients down. Parents and other family members of young female patients should realise her plight and support her to cope with the situation because timely and proper medication CAN control RA. I, as a doctor, always tell this fact to everyone; but special efforts have to be taken to encourage young girl students to complete their education and lead an independent life by seeking suitable job or business.
Let’s go back to the point we started with – marriage or wedding. It is an important milestone in anybody’s life and Indian society places wedding on one of the highest pedestals. As we know majority of Indian weddings are arranged by parents and kin. Parents of a girl suffering from RA are quite in a fix – if they decide to be honest with it right from the beginning they stand a (very high) chance of losing the ‘deal’ altogether. On the other hand if they keep mum and the girl is married off without the in-laws realising her ‘RA+’ status she can suffer more in the later years because one just can’t hide RA! Lack of or a gap in medication will allow the symptoms to resurface. The situation turns ugly for the bride and her parents leading to discord and, occasionally, a divorce. This also has many negative social implications. As a gynaecologist Rheumatologist I always advice my patients NOT TO hide RA, to remove misconceptions about RA and acquire scientific information about it. Many misunderstandings between the spouses and their in-laws can be avoided with proper counselling.
Once married the female RA patients have an endless string of queries and doubts. In India hardly anyone openly discusses sexual relations and problems. Many (even newly married and young) RA-women with painful, deformed, dry and swollen joints try to avoid sexual relations. This obviously leads to depression, low self-esteem, misunderstandings and dissatisfaction if the husband is not caring and sympathetic. I have come across extreme examples amongst my patients – one of the regulars had RA from a relatively young age and it spread with time. Since she could not conceive her husband married another woman and had a separate setup going. Such true cases leave us speechless.
Another major step in a married woman’s life is becoming a mother. In many a-cases RA, from a young age, not much controlled due to lack of proper medication prevents a woman from conceiving. Actually women with RA can give birth in natural way and the foetus or the new-born is NOT affected (through placenta) by mother’s disease…but nobody bothers to publicise these facts assertively. I think not only the female RA-patient but her in-laws have to be made aware of the scientific points. This will help to avoid many misunderstandings and also there won’t be undue pressure on the bride to get into an early pregnancy.
Thus it can be said that RA not only affects a girl’s or a woman’s body but poses many challenges to her on psychological, social and financial levels. The constant pain, medicines, deformed joints, loss of efficiency and degraded quality of life…all these factors play down on a woman’s confidence. If the in-laws don’t understand her situation she faces continuous harassment and occasional neglect. She starts losing her enthusiasm towards her own life, sometimes being reckless about her ailment. What she really needs in such situation is care, love and understanding. If she is given a dose of these qualities her confidence grows and she is better able to fight RA. Yes, this IS a costly disease and the common citizens break down under the expenses of ongoing tests, medicines, various professional charges. The case of a woman is more difficult in this aspect since practically all rural and many urban women are still dependent on their male counterparts (husband, son, father etc.) for money. They naturally feel guilty about the amount that has to be spent on RA and try to keep mum about the possible severity of the disease or reduce the quantity of medicines to be taken.
Have a heart, all female RA-patients!! Due to modern medical technology and research the situation is surely changing. With timely diagnosis and the use of newly developed medications RA can be kept under control. What is really needed is making the society more aware about RA. Even a changed, positive perspective of looking at women patients of RA can reduce their plight by a lot. What they need is an elevated psychological and social support to make them stand on their own feet and face the enemy within – RA.
So let’s lend a hand to all RA-affected women – and succeed, singing this song !!
(We shall Overcome someday)
(Oh, deep in my heart I do believe, We shall overcome someday)