Recently, I read about Lady Gaga cancelling her concert tour due to ‘Severe Pain’.
I have seen a few cases in our family / friends circles who have experienced / battled what we term as Invisible diseases. The challenge of living with such a disease is Being Sick Yet Looking Fine (which seems contradictory to those who haven’t seen / understood / experienced such conditions).
I thought of exploring this topic through the experience of my friend, Maitri.
Maitri is a Wife, Mother, and a Corporate Woman. Until recently, she was heading a software unit managing pretty much every aspect of that Company handling clients in multiple time-zones. As any working woman, she had to strike a fine balance between family and work responsibilities. She loved all the roles she had to play though.
Some were supportive, some were jealous, some were ambivalent of her work and achievements.
Things were going okay. She started experiencing fatigue, dizziness, pain in the neck area and knees. She informed her team and took a day off; thought resting at home would fix it. Next morning, things didn’t seem to improve. Her husband took her to the Doctor; he talked to her about her work and family and diagnosed her with migraine and gave some medicines.
Conditions seemed to improve a bit for a few days, but she was down again. Some of the symptoms she was experiencing didn’t really match with Migraine. They sought a second opinion. A MRI was ordered. Report came out to be fine; no issues in the brain section. After few more tests and blood tests, the neurologist arrived at the conclusion that she has Fibromyalgia, apparently a chronic pain condition!! This is something they had never heard of. Doc suggested a few neck exercises and advised her to alter her work schedule!! Apparently, there is no medication for this condition other than anti-depressants, pain relievers, and life-style change!!
She had to take a break from work to recuperate. After a month, she resumed work on an altered scheduled, but Fibromyalgia symptoms resurfaced and had to go on leave again.
While battling this condition, she had to hear comments from her family, relatives, and colleagues. “Why MRI for a headache!! You should have seen a general physician; this is the problem with the specialists!!”, “You must be stressed out; you should learn to compartmentalise things”, “Learn to draw lines when it comes to work”, “You are taking unplanned time-off so often”, etc.
Even people who are kind of aware of her medical condition made some hurtful comments, “You don’t look sick though“, “Will be you fine tomorrow?“, “She is not working. My son is handling things quite well; he is managing kids, kitchen and everything.“.
Maitri decided to take a break from work as she didn’t want her medical condition to affect the company in any way. She always believed in grooming and cross-training her team members. She prepped the team for her exit and left.
The months and years that followed were quite painful and challenging. She couldn’t do things that she would normally do without batting an eyelid. People thought she was being rude / arrogant / anti-social / too full of herself.
Her husband, kids, and moral support from her parents saw her through that phase. Belief in God and spiritual energy helped her. Her kids made her watch YouTube videos wherein people with such chronic, invisible diseases talk about their ordeal, how they have dealt with it and emerged stronger.
Things have become manageable for Maitri now. She has learned to cope with her condition. It has made her more empathetic and compassionate towards others, equipped her with strategies to deal with negative people / situations, understand the fragility of things around her, and more appreciative of life in general.
There is an adage, “Don’t judge a book by its cover”. I guess, we can say, “Please don’t judge people just based on their appearance”. We never know what other people are going through in their life. It is better to keep quiet than passing some hurtful / insensitive comments, right?