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The picture is me at the famous Chele La pass in Bhutan, the highest pass with a beautiful view, I managed to climb a small bit near the top with the help of that walking stick, our sweet cabbie and motivation from a dear friend, I was in excrutiating pain but wanted to scale the small bit for the view and it was worth it.
The thing about invisible illnesses is that they take years to get diagnosed. Doctors are not sure and first try and rule out other possibilities, leaving you to doubt your pain. Since you have not been diagnosed, there are times you feel it is laziness or mind games or self sabotage and it takes decades to come to peace with it and own it. My story is somewhat similar, and I want to share this today so that it helps anyone else suffering in silence. I want them to know that they are not alone. My invisible illness is Osteoarthritis or OA, it causes chronic pain and inflammation in joints, in my case it’s my knees. This is a degenerative disorder, i.e. it worsens with age and there is no cure for it, like diabetes, you learn to manage and live with it. It can be genetic and is triggered by trauma most of the time. With season and temperature and humidity the pain levels can fluctuate and there are flares or days when the pain and inflammation flare up for no particular reason rendering the person immobile or bedbound. It is one of the trickiest illnesses out there because if you do not have it, you cannot understand it, period, don’t even try. This is the reason most doctors cannot empathize with patients and diagnosis takes longer than usual. At Least for me that was the case, I was properly diagnosed only at the age of 33, after many consults, a knee surgery for a ligament tear 7 years prior, multiple X-rays and MRIs, thousands spent on medications and supplements. Even after my diagnosis, I underwent many more supplements, one more knee surgery to repair my ligament and adjust my knee cap, several physiotherapists and thousands of rupees spent on finding a miracle cure until I finally understood and accepted it.
I was an energetic child and my mother says I always used to wake up with a smile. I had a spark in me that would energize anyone who came in contact with me. Always dancing, jumping, running around, giggling and laughing. But there were signs from the begining, when I was a toddler I would compalin of leg pain, it was not knee pain, but my legs would hurt if I exerted too much. My pediatrician told my mom that I needed more vitamin C and no one really took it seriously because a good night’s rest would usually cure it all. As I grew I started putting on more weight than the average age group but I was still just as active. Participating in every activity at school, I was a dancer, shot-put player, throw ball player, represented my school at several inter school competitions, and participated in the school march past troupe. As I mentioned earlier, OA is triggered by trauma, my first trauma was a ligament tear at the age of 16 while practicing for my shot-put competition. The doctor just took an Xray and did not feel the need to explore further.My father who believed that doctors are thieves and did not deem it necessary to go any further. Painkillers , hotpacks, rest and age helped me bounce back. The other leg took the major role and I went through years in life not realizing I had onset of OA.I learnt to bear the pain and push through like a soldier. But I started falling down often and would hurt myself more frequently after that injury, the knee would swell up to a point it would lock and I needed hot water fermentation and pain killers and rest of a few days to come back to normal. When I was 22years old, I had the second injury that turned my world upside down. I was dancing away at my brother’s wedding reception and my good knee twisted and I fell down. I remember the piercing pain and I almost blacked out, my cousins helped me up and carried me to my room in the reception hall. There was a doctor among the guests who checked and it was nothing major, I took my trusted companion, 600mg of ibuprofen and soldiered through the rest of the wedding. As usual my narcissistic father conveniently brushed it off and proclaimed I was clumpsy and needed to lose weight and it was not a big deal. The worst part is I believed him, I was 22, in the last year of my masters degree in Biotechnology and yet, I believed my laziness and weight was the problem and did not bother to explore this further. But I started losing balance often, I would fall even while standing, my knee would buckle, for those who have not had a ligament tear will not truly understand that feeling of your knee buckling. It is scary and creepy to say the least, finally with my brother’s help, I managed to get an MRI and it revealed my ligament tear. The doctors who performed my ligament repair, failed to diagnose even then that it was OA. It is strange now when I think back. And it always baffled me that I never really recovered from my knee surgery like a normal person with an ACL procedure would. I would read about these people who underwent ACL repair and in a few months started sports, dancing everything. If anything my pain worsened and I was hooked on NSAIDS (Non-steroidal anti-inflammatory drugs) aka Ibuprofen and Combiflam. These two were my crutches, and still are my best buddies and survival kits. I continued to believe the hokum story that my weight was the root cause and invariably made things worse, I took up gyming, fat burners, and personal trainers who knew nothing about physiology and injuries. I would try and try and end up miserable or more injured than ever and guess what, I thought I had no will power.
If you have OA you will notice, people around you fail to understand, and you will fail to convince them ever of the degree of pain and suffering.You see OA has what we call flares, or certain days that are worse than others, when you cannot get out of bed. There are very good days when you can walk a mile, and genuinely feel upbeat, so most of them end up thinking you are lying, that you are trying to gain sympathy or that you are plain lazy. And it is understandable, let me give an example. I was sent to Manila, Philippines on a business trip for 2.5 months, it was an amazing experience. I travelled with several other colleagues and we were all put up at a hotel 3 blocks away from the office building. It was close enough to walk but I would struggle to walk the 3 blocks carrying my heavy laptop bag and would invariably ask a male colleague to help carry it for me. They were sweet enough to help me out. Now Manila is the city of epic parties and over the weekend we would all frequent the pubs and dance floors, me being a dancing nerd, I would dance away like a crazy woman, for an observer it would have felt like I was a liar, how is she dancing now when she cannot even walk 3 blocks with her laptopbag. What they did not see was that I was dancing despite the pain because I had learnt to be in constant pain and I knew I would pay for the dancing with 3 days of chronic inflammation, knee lock and loads more Ibuprofen, but I did not want to miss out on life.I was ready to pay that price for that night of fun. Not just colleagues, even friends and family at times struggle to believe and understand OA. It can leave one feeling alone and misunderstood.
Arthritis itself is known as an old age disease and hence believing a 30 something would have it is a crazy notion. I don’t walk with a crutch or need a wheelchair, my disability is unique. I have powered through life, joining colleagues and friends on short hikes, go out dancing, visit different countries and as you can see in the photo climb small distances, leaving others thinking why at times I can do certain things and at times I prefer to sit back. My frustration was that I insisted on explaining my condition to everyone, and when no one would understand it would drive me nuts. Many nights I have spent on my own, feeling sad, feeling like an outsider, misunderstood and an island. I travelled alone to various countries and I found that more enjoyable as I could pick and choose the activities as per my pain needs. For example, I visited the beautiful island of Boracay in the Philippines on my own, I spent most of my time there plonked on a white beach chair with a cocktail staring at the blue sea, but one morning I felt fresh enough to go horseback riding around the island, I hope you get my point by now :-).
The second major setback was when I injured my back, not a surprise again while dancing, you must be thinking by now I should have learnt not to dance, but weddings and dance are not combinations to be missed. I got MRIs of my back and my knees done and met this horror or an orthopedic who declared I needed immediate total knee replacement of both knees. I went into a huge shock and it just hit me hard. But I knew something was not right, that is when I met a sane doctor, a doctor who spent 30 minutes listening to me, that is extremely rare nowadays, he did not ask me for any tests. He only ordered a simple Xray and showed me that I had Osteoarthritis, that I had used my knees a tad too much and that I needed to preserve them now. He said total knee transplants only last 10 years and given my young age it was ridiculous to consider. He put me on some supplements and NSAIDS. I walked out there a bit relieved but I had not accepted it yet. It took me many more years to reach the stage of total acceptance.
After that, my knee cap moved for some reason and I had to undergo a second knee surgery. I never fully recovered from it either. This time I requested the doctor to wake me up as I wanted to see the surgery, I watched for sometime on a screen as the camera moved into a dark abyss that was my knee and what looked like old, shredded curtains hanging in the dark was what was left of my cartilage. It was surreal, like a halloween decoration or a haunted house,the doctor scraped out the shredded pieces and fixed the knee cap.
Again I struggled to understand why my recovery was not as expected for a normal person undergoing the same surgery.I slipped into depression a year or so post my second surgery. It lasted for months, I isolated myself working from home mostly, days would go by and I would not even step out of my house. I had to take sleeping pills to sleep and I had hit one of the deepest rock bottoms of my life. Not the first, but the worst, it felt like I had no way out. I tried and I kept trying, searching for a miracle cure, maybe that ayurvedic medicine, or that oil, or that supplement just anything. Praying and praying for a total cure and just hitting dead ends everywhere, again I blamed my fate, my lack of willpower, my body weight just everything. One thing I must mention, I always excelled at work despite all this, I would give my 110%, hardly anyone knew what I was going through. It took me a lot of introspection, self work, healing, spiritual practices and the thing I thought I lacked, will power to realize that I need to stop fighting this. I needed total acceptance of this condition and I needed to surrender the search for a miracle cure. I found online forums and communities and read experiences shared by others suffering from OA and I realized I am not alone. I stopped apologising and explaining my condition, I started stating it as a fact and it was such a relief.
I have accepted the fact that not everyone will understand my condition and I am absolutely ok with that. Instead I now put forth what I need, if I am outside with others and have been standing for a while, I say I need to sit for a while, no explanation attached. If there is a team outing to an adventure sports club without a lounging swimming pool, I say I cannot come, because there is nothing for me to participate in.
My only advice to anyone who is dealing with OA is accept it wholeheartedly as a part of you. Stop explaining to others, if you need to rest, rest, if you need few days off work, take them, if you cannot go mountain climbing with friends or colleagues, just state it out and find something else to do, yes it will not be like flipping on a switch, and yes you may feel left out, but it is alright. You have an invisible disability and unless you say it out loud as a matter of fact, it will pull you down and make you feel miserable.What we are dealing with is beyond imagination, because people cannot see the disability and we cannot see it at times, but the strength of character you have due to living with this is above anyone around you. To show up at work, at parties, at weddings, at birthdays, going shopping with a friend or doing anything, all the while with at least 25-30% pain in the body is extraordinary. You are great just for being, you are brave for contributing despite these challenges and doing it all with big smiles. I bet most of you going through this are the agony aunts of your respective groups, giving wisdom and solace to your friends and loved ones.
Two astronomical entities define OA for me, Chiron the comet asteroid known in astrology as the wounded healer and the great planet Saturn who is described to have a limp and is a significator of our past karma.Both are dealing with physical challenges that never heal and yet they are highly spiritual and guiding and healing powers for others. If we are all mighty warrior souls, our super power is not physical strength it is the mental and emotional strength that is beyond the understanding of most healthy humans and it gives us the power of empathy, the power of understanding and the power of inner strength and patience.
To all you OA warriors out there, I salute your bravery and strength of character, wear your badge of honor with pride, take care of yourself, take your meds, do those exercises, rest when you must, but stop explaining, not everyone can go through life with this challenge. Stop frantically searching for a miracle cure, spending thousands on supplements and quick fix solutions. It is not that we stop praying for a cure, I do hope there is a cheaper, painless, non surgical cure for OA somewhere, but stop the desperation and subsequent despair running after these solutions. Understand the deeper meaning of this challenge in life, I know it is not easy, days when you will feel down in the dumps, just be, don’t rush, you are human. Just never forget that you are a living example of tolerance and endurance, give yourself credit. You are your priority, do not expect others to make arrangements for your comfort, demand and state your needs out loud and clear, treat yourself with the gentleness and VVIP status that you deserve. And so share your experiences with me and others, let people draw inspiration from you.
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