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

December 05, 2015

Healing the bitter core

In my previous post, Losing my cores, I wrote about the devastating effects of my chronic pain and disabling condition, particularly on my core psychological state. I believe that the assaults on my psyche have been in phases and in forms of waves. As the problems waxed and waned, so did my bitterness. A complete physical or psychological recovery never happened for years.

I came to know that I have a genetic disorder when I was 38 years old and that I was never going to recover completely. To top it all, my child might actually get the condition from me. When I realized this bit, I felt that I was going to drown in the wave of bitterness and sadness. But I did not. And right now, my psychological core is the healthiest it has been in a decade.

There are many factors that I believe have contributed to healing my psychological core, and I think while some of these factors are generally applicable to most people, some other factors are personal and unique, depending on the person's unique personality, background and the attributes of the losses they have faced.

These are the things I believe helped me heal my bitter core.

1. Validation 

First and foremost, it was getting the diagnosis. That there is a disease that explains almost all that is wrong with me and has been wrong for the past 38 years, was simply liberating. It helped me gain credibility among friends that indeed I was not imagining the strings of explained illnesses. It brought back my lost confidence in myself, my sanity and my strength.

2. Support 

The understanding and kind words that I received from some empathetic friends after I informed them about the diagnosis were like a soothing balm. They made me feel less alone. Like in the case of grief, I went through stages of anger and depression while dealing with the diagnosis of an incurable disease. I did not express or share these to any great extent with anyone except my spouse and his support and understanding of every reaction I had were cornerstones for my healing.

3. Self analysis 

I had to accept that I was indeed feeling all that I was feeling. I had to accept that I was bitter and resentful, at no one in particular, but a lot of it was directed at doctors who had always been dismissive towards me. I also had other problems both on psychological front (I have Asperger's syndrome, I have SAD, I have anxiety disorder) and on the personal front (financial setbacks and other traumatic events). I had to acknowledge and accept these.

Accepting what I was feeling was also a source of internal conflict for me because I had not known myself to harbor negativity, bitterness, depression or pessimism for any great length of time ever in my past life. I would always say that there are only two kinds of experiences - happy ones and learning ones. But in this last stretch, I felt I had learned enough from this unending experience. I wanted it to end and wanted to move on to the happier experiences for a respite.

Chronic disease and chronic pain change you as a person. During this change, it is extremely difficult to gain control of the steering. It was as if my life was falling apart, my mind was unraveling, I was in excruciating physical pain, I was disabled and I could no longer understand myself and my reactions. But one needs to keep trying. Otherwise, there is no telling where one might end up!

4. Self help


I read a lot of books and literature (including internet resources) on the condition I was diagnosed with. For me, information is power. Information was the tool with which I could repair my life. The arms with which I could fight this entity inside my mind. I read a lot on mindfulness, meditation, the psychology of pain and loss, parenting from the perspective of disabled parents, and such topics.

Faith and acceptance 

It is extremely effective to take recourse to some sort of faith, religious or otherwise, I think. For me, it was my deep belief that we are all living beings united in this common experience called life, with its joys and sufferings and all. No life is intended, by any intelligent design, to be more protected than the other, in facing natural adversities, diseases included. We all try to survive, as individuals and as species, to the best of our ability, and none of us can assure a favorable future to any great temporal or spatial certainty.

I do not feel entitled particularly because I am a human, which is a source of great strength and humility for me. Life is as fickle for me as it is for the ant in front of me. And some ants might have a better chance at survival without being crushed by someone than some humans in some parts of the world. And humans may kill for entertainment, but animals do not appear to. I feel united in suffering with all living beings, and this acceptance of universality of suffering and the biological instinct for self preservation helped me accept the truths I was facing. There is no one to appease or bribe to make it all go away for me just because I have human intelligence. I accepted my condition gracefully and sought to do what I could, in my circumstances, using what I had access to. 


While the benefit of connecting with others appears to be common sense or common knowledge, now it is also being validated by numerous studies that it really helps in healing psychologically and physically. If you are fortunate enough to live in some of the countries in the west, you can have actual physical support groups in your areas. But internet support groups and support forums offer equally good support if you have access to the internet. The net also allows you to connect to others who are also struggling, from all over the world, and in many flexible ways. When people share their stories, it is privilege to be allowed into their most private or personal realms. When the compassion flows in my heart for them, it flows for myself too. In feeling compassion for others, I could forgive myself for not being the strong athletic rugged person and parent I would like myself to be.

Find the positive 

There are different ways this is described. Count your blessings, find something positive, feel grateful, etc. It can be sometimes simple to really appreciating all the good things in your life. Sometimes you may struggle to appreciate the good things, even if you know they are good, because your depressed brain won't let you see things that way. Sometimes you may struggle to think through the excruciating pain, and it is quite challenging to think of "blessings" when you are undergoing pain that is worse than labor pain. Different days, different disabilities, different levels of pains will bring different challenges in finding something positive in your situation. It is difficult, but keep trying.

There may be people who do not understand this while advising you, and I think it is one of the most annoying things about them. I would like to tell them that imagine your thumb is going to be smashed with a huge hammer by an evil villain. Forget the moments before it happens (you might manage to be thankful that he is not killing you) or the moments afterwards (you might manage to be thankful he did not kill you). Just focus on the exact moment the hammer struck and you screamed. If that moment never ended, if it got drawn into hours, weeks and days? What then? 

Express and mourn 

Here I use the word express not just in the sense of verbalizing, but also in the physical and mechanical sense of pressing it all out of you. Writing a journal (really writing it all out, even if you have to burn it later) is therapeutic. Writing a blog or contributing from your experiences to a forum helps. As do talking and sharing in any other way (FB, memes, tumblr, pinterest, etc.) that appeals to you. When you start "expressing", your expression will also have stages. Keep your focus on getting it "out of you" to feel better and to have a tad bit less bitterness "inside of you".

You have to mourn the loss of the previous you, and the mourning will take its time. You will take time to accept the new you and it can be quite challenging, seemingly impossible, to love the new you. Sometimes using negativity focused sites or groups can make you spiral further down, so be mindful of your goal and vision of the group/site.

Help others 

My job involved helping others in a very direct and effective way. Since I enjoyed helping others, I also worked many extra hours every week beyond the requirements of my job to help people using my professional skills. Losing my job created a vacuum in this area of my life. I struggled to find something else that I was capable of doing and that had as much impact or in such a large way or reaching as many people as I could do previously. I actually did not find such a surrogate activity or cause that I could contribute as much to in the light of my limitations. I downgraded my expectations from myself. I taught myself to enjoy the difference I made to people in other smaller ways. This included simple things like writing, helping someone else with writing, helping people online in various ways, helping people who needed someone to talk to, taking interest in causes close to my heart and contributing to them, sponsoring children, donating books, etc.

5. Treatment/ management of underlying condition 

The reason I put this so much further down the list is that I believe although getting physically better is important to feeling better, it is not central to it. If someone has access to good management options, then obviously the treating team will also focus on the psychological aspects. Being heard, getting a holistic treatment, and being in less pain will dramatically enhance your psychological well-being. I did not have access to such treatment. But I managed to start the psychological healing without the physical healing, and I believe that the insight of this being possible has made me stronger. Of course, I had to overcome the bitterness of not having access to such a treatment and heal myself knowing that there could be a better life possible if I was born somewhere else.

If there are other psychological conditions that are contributing to the sadness or bitterness, like significant or organic depression or anxiety, they do need to be addressed. It is possible to be not bitter in the presence of physical illness or the physical components of an illness. But in my opinion, when the neurochemical or psychological mechanisms are strongly active against your mental well-being, it is often not possible to cognitively override them completely and start feeling good.

Like all efforts towards any sort of strength building exercise regime, maintaining the health of the mental core is a continuous process. People can be happy or unhappy in a more pervasive or underlying way, while having smaller joys and disappointments of day to day life. There are regular ups and downs in the physical wellness in JHS/H-EDS. If my mental core is strong, the smaller ups and downs of day to day life are just like gentle ripples on an underlying calmness. If my mental core is happy, the frown on my brow does not take away the spring in my step or the smile on my face. Sometimes the frown or the spring or the smile is only internal and invisible, but the point is, they all co-exist.