Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

November 23, 2015

Losing My Cores

Core, /kɔː/, noun, The part of something that is central to its existence or character.
Our body's core is the midsection area of the body: chest, back, sides and abdomen. The strength of the core is determined by the musculature in this area including the deep muscles. The core stabilizes and supports the whole body. This is the physical core that comes to mind when we speak of core strengthening. 

However, I believe we have a psychological core, that is as basic, crucial and central as our physical core. I believe that while a weak physical core, as having JHS-HEDS can entail, cannot kill me, the loss of the psychological core is perfectly capable of killing me. And my experience with JHS-HEDS was that it destroyed both my physical and psychological cores, necessitating a healing process at both the levels to return to a certain level of well being.

My health problems really began in infancy, but they started making my life difficult when I was 5 or 6 years old. The problems increased during my teens and my twenties even more worse with two periods of exacerbation. My disease put me through the worst phase of exacerbation from age 31 to 39. During this phase, it consumed all that I valued in my life, many of my core strengths, values and identities. It consumed my psychological core. 

I had strong convictions about my independence, capabilities, strengths and qualities and strong beliefs pertaining to justice and fairness. Also relevant to the context of my post, I had in my core, the ability to keep unfailing hopes and undying optimism in face of adversity. My life had not been a smooth ride for many reasons, but that did not bog me down. I counted my family, friends and relationships as my assets. My core expectations from myself as a part of the external material world were that I would be successful in my career and be a pillar of support for my family, especially my aging parents. I was grateful to have a job that involved helping people directly and making a difference in the lives of people every day.

My disease ate away at my cores slowly. With each episode of exacerbation, I got worse and worse. As my condition worsened, I had to quit my job when I was a year away from submitting a thesis and getting a degree that would bump up my career trajectory. As I stopped working and became confined to a bed, I lost touch with all my colleagues and quite a few of my old university friends. I think it was not easy for them to related to the new me, and they could not deal with the awkwardness of the situation. I lost my independence and I could not get through a day without being helped by someone for the most basic activities of daily life. My cognitive abilities worsened. And waves of exacerbation, ever increasing intensity of existing problems and a continually increasing list of new problems and new disabilities destroyed every hope to which I tried to cling on.

Finally, it ate away my physical core to the point that I could not stand in a bus without being wildly thrashed about with the slightest turning and braking of the bus. I struggled to maintain my constitutional optimism for months and years, but my situation did not improve. I felt all sorts of negative emotions at times. I did not have anyone to blame for my condition, so I did not have a proper or single subject for these negative feelings. I felt unheard and that no one (save for a couple of closest persons) understood. 

Apart from the constant anguish, I battled episodic resentment. I resented the dismissive doctors. I felt angry with the events and difficult conditions in the past when the physical effort had caused damage to my wrists and led to multiple instances of slipped discs. I found it unfair that all my dreams had crashed and depressing that there was no hint of a better future.

I lost my financial stability. Being hard up also meant I had to cope with physically demanding things to get through the day - take public transport, live in buildings without elevators, house work and child care without the possibility of hired help and lack of access to proper rehabilitation programs, disability aids and supports. I was afraid and anxious because I did not know what was happening to me, what was in store for me and that I would live the rest of my life being dependent on others while I should be supporting my old parents.

I got a diagnosis only at 38 years, after which a new phase of healing started. For the first time, I knew what I was fighting, and that was a vital part of the healing process. However, strengthening the physical core is being easier than the psychological healing. There are umpteen number of resources out there on how to strengthen your core muscles. Your physiotherapist and your doctor will offer you good advice on that. However, healing your psychological core is something is something that often is not covered by anyone, and my next post will be on that.  

When you start your physio program to strengthen your body, don't forget to start a repair program for your mind as well.