MHR, as she prefers to be referred to as, has been battling Behcet’s Syndrome, a rare auto-immune disease for the last 17 years. Having been through various stages of pain, depression and hopelessness, body image issues she has tried ayurveda and yoga, to get some relief. She is keen to spread awareness on auto-immune disorders and wishes that doctors not treat her as guinea pig.
First diagnosis
I was diagnosed with Behcet’s Syndrome in 2001, after an illness of over 6 months. I was 23 then. I had recurring mouth ulcers initially, followed by genital ulcers and difficulty in movement. I had consulted at least 5-6 doctors of various specializations – GPs, gynecologists, orthopedics, homoeopaths – but none of them could give a proper diagnosis. Herpes was suspected and anti-viral medicines were given. (One gynaecologist even asked me in confidence if I had indulged in sexual activity thinking I wouldn’t have the nerve to admit such a thing in front of my mother who had accompanied me. I had not and I told her so. What was painful was that she kept telling me “It’s ok, you can tell me” even after I gave her a straight answer and I had a tough job convincing her.) Anyhow, her diagnosis was wrong too and I don’t know what meds were prescribed then, but the virulence of the ulceration increased. Soon I was bed-ridden, unable to move or even to go to the bathroom on my own, and due to the genital ulcers, passing urine had become a nightmare. I was on liquid diet due to the extensive ulceration in my mouth.
It was at this stage that a family friend took me to consult a dermatologist he knew, and it was this doctor who made the diagnosis of Behcet’s syndrome, but said that the situation was bad enough that I would have to be admitted to the hospital – both for a formal diagnosis and for the treatment.
I was taken to the hospital for a diagnosis. By this time I had stopped speaking for over 2-3 weeks (due to severe ulceration in the mouth) and had to communicate only through writing. Apart from ulcers, I had lesions all over my forelegs and had severe pain in joints. I was taken in for obtaining a sample of my tissue for biopsy and I fell unconscious there. Over the next few days, I underwent a battery of tests and they finally confirmed that this is Behcet’s syndrome, without ocular or CNS (Central Nervous System) involvement.
Related Reading: I am the hero of my story with Behcet's disease
The Feeling Of Objectification Was Depressing
I was put on a high dosage of steroids to suppress the immune system and my condition was studied over a period of about a month that I stayed at the hospital. Since this was a rare case, I was a case-study for the MD students.
I admit here that this was the worst period of my illness – I was there on the hospital bed, practically half naked, with people staring at me for hours on end, talking to each other as though not realizing that I can hear and comprehend them. The feeling of objectification was deep and depressing. Several days of “Why me?” bothered me since no one else in my family (neither my mother’s side of it nor my father’s) had a complaint even remotely resembling this. And the level of pain I had to tolerate was unthinkable for me at the time. At the time of discharge, there was a short session of ‘counselling’ with the doctor but that did not really prepare me in any way for the drastic change my life had already undergone. I soon discovered that all the things I had taken for granted (having a full-time career, pain-free life, travel – all the things assumed in a ‘normal’ life) evaporated practically in front of my eyes.
Eventually I was discharged but I continued to be on steroids and colchicine and the steroid dosage was reduced very gradually. The withdrawal symptoms were more painful than I can possibly express. Though I had lost a lot of weight during the initial stages of illness (nearly 7-8 kgs), I had gained much more after 6-8 months of steroids. Apart from dealing with the physical challenges of having unhealthy weight gain (the joint pains were quite excruciating, fitness was at an all-time low and I could barely walk 100m), I also had to deal with psychological issues of battered body image and inability to do the things I wanted to. I had discontinued my job due to this and some level of financial insecurity was also felt.
Over the next few months, certain improvements happened – I managed to start attending yoga classes where my teacher made me do only therapy exercises. All I could do then was to finish class, come home and sleep. There was gradual increase in my physical activity, and over the next few months I managed to shed the weight I had gained and the pain levels were under tolerable limits. Experimentally, I was asked to take penicillin injections every 20 days to keep ulcers in check, which went on for more than a year, until I had a minor relapse.
After a prolonged period, I resumed my full-time job but it was difficult to keep up with the others. It was only with a good deal of determination that I was able to manage a job, pursue my interest (music) and manage the condition.
Relapse
I used to consult an immunologist in my city each time there was a hint of a relapse. There have been several minor ones and one major relapse. The latter was after about 8-9 years of the first diagnosis but there were complications that time since the doctors diagnosed a lung infection in addition – which made them unable to decide whether to put me on steroids or not. Alongside severe mouth ulcers, genital ulcers were much more serious and painful this time. Finally they balanced the meds in a manner that brought down the ulcers rather slowly – more slowly than what can be easily tolerated. This time around, it took me more time to get back to a new normal.
I had been diagnosed with tuberculosis and was immediately started on anti-tubercular medication. However, since I reacted adversely to it, I was prescribed the old-fashioned streptomycin injections – 1 each day for 100 days – after which I was started again on the standard anti-tubercular meds. I was dealing with nausea, loss of appetite etc and for a period during the early stages, with thickening of saliva (so much so that there was a threat of choking). Each time, each of this ‘effect’ was treated separately by some other medication.
One difficult side effect of the medications prescribed was the weight gain. With some deterioration in the muscle mass and constant tiredness, it has been very difficult to lose weight.
Ayurvedic treatment
After dealing with the side effects of the various medications, I shifted completely to receiving Ayurvedic treatment and I have been on this for more than 8 years now. Behcet’s wasn’t treated as Behcet’s in Ayurvedic but a detailed diagnosis was made using their framework.
Currently I am completely off colchicine or any other meds that had been prescribed earlier and am only on Ayurvedic medicines and a strict diet.
There are several improvements – the frequency with which I fall sick has reduced. The digestive system is slowly getting back on track with regular bowel movement. And most definitely, the improvement is in my monthly cycles, which has been, for a long time irregular and painful (this possibly has been an independent condition). It had not responded much to hormone therapy which was administered by gynaecologists 5-6 times for six months at a time over 10-12 years, and it would become irregular when I was taken off the hormones. I have since then been diagnosed with PCOD (Polycystic Ovarian Disease). However, the Ayurvedic treatment has been very effective and it is fairly regular now. The pain, however, has not been significantly reduced and since I do not take pain medications, pain is something I have learnt to manage.
Challenges
The arthritis that started with the diagnosis of Behcet’s and the very low threshold for pain in muscles and bones has been one of the most difficult challenges to tackle. Even though I was not in robust health even prior to the diagnosis, this level of pain on a daily basis is possibly the most difficult challenge I face.
With a weak immune system, even small things like getting wet in the rain and a few mosquito bites when I visit my institute campus leaves me drained of energy or even the strain of a half-a-day’s running errands brings me down with fever. I never know when there can be a relapse and each appearance of an oral ulcer gives me a panic attack.
My lung capacity has significantly decreased (despite pranayama practice) after my lung infection. This and arthritis have together affected my musical interest since I could no longer sit and sing for more than half an hour at a stretch.
There has been a psychological aspect of this too, leaving me depressed from time to time. This condition, with its complex manifestations, is an invisible disability, and I find it very difficult to get people I interact with understand the levels of pain I face each day and treat me with empathy. However, after the initial phase of difficulty in coming to terms with a chronic condition, I have been able to accept it and make suitable modifications to my lifestyle to manage the situation.
Things that have helped me
- Family support matters much when dealing with chronic pain. Through the first diagnosis and subsequent treatment, my mother and brother were my pillars of support. It is a blessing indeed to have very supportive family. Having a very loving and understanding partner has been invaluable. My daily routine suffers much due to pain issues and so do my moods. I am lucky that my partner handles both very well.
- I started yoga therapy some months after my first diagnosis. It has helped me much in keeping the muscles conditioned. I still find it difficult and painful to keep it in my routine but it is a necessary part.
- I also made a significant life decision a few years ago to change my profession (I used to be a software consultant but am now more into academic endeavours) – something that has affected me adversely financially but has paid huge dividends by way of helping me cope much better with my condition. The positive has been partly due to the flexibility my work offers me and also due to the sense of fulfilment it gives me.
- Lastly, meditation helps a great deal with regard to coping with pain. This, I have experienced, over the past several years. My pain threshold is still low (I bruise easily, even small things hurt a lot and for a long time too) but the tolerance for pain has increased.
What can be better
If there is one thing I can change in the current situation in India with regard to Behcet’s, it is regarding spreading awareness about auto-immune disorders in general and Behcet’s in particular. Since the manifestations are varied and this is an invisible illness which has physiological and psychological ramifications, the support system requires drastic improvement where counselling is offered and a commmunity is built that will help us accept and cope with the condition, without being judgemental about treatment choices.
On a more general note, the feeling while on the hospital bed with a rare disorder is too close to being treated like a guinea pig which learns about the experiments to be conducted on it. If the doctors can exercise a little more consideration – keep in mind that the patients have feelings and can hear all the discussions they have amongst them – it will be easier for the patients to cope.
