We all have certain a-ha moments of our lives. An enlightening realization. A shocking revelation. An overwhelming insight. For me, it was a devastating diagnosis. Although being told that you have a disorder without a cure is not exactly thrilling I distinctly felt the kind of rush I felt decades ago when Hercule Poirot identified the murderer in my Agatha Christie novels. Gotcha! The rheumatologist told me that I had Joint Hypermobility Syndrome (JHS), also known as Hypermobility Syndrome. My thoughts were: so I do have a disorder, and it is not all in my head, as I have been told for three decades.
Over the next few days, that rush of being validated and diagnosed persisted, and sometimes overshadowed the crushing depression the diagnosis had brought. For the first time, I knew the enemy I was fighting. I think a common feeling among people who have JHS is that deep down they know there is something far more wrong than the pains they can name. There is this elusive and invisible demon I am fighting and I know it exists, and people just don’t see or understand. And now on knowing its identity, hope soared somewhere deep within my soul. Now that it is out in the open, I can fight it.
The new information sank in slowly while thoughts about the implications raced crazily through my mind. A genetic condition without a cure. Lifelong pain. 50% chance that my toddler has inherited it. Not life threatening. But do I want to live on like this and for how many more years? What am I thinking, I have a child! Why did I have a child! I cannot end my own misery because I am a mother. Will my child lead a life of pain like me? What about old age, how much of a burden will I be on others? These thoughts consumed me for the next days and weeks. I felt resentment for not having been diagnosed earlier. I cried reliving all the painful moments and years. I mourned the loss of my physical independence and my career. I mourned my future children now I will never have.
In such periods, it is useful to find a focus or support to hang on to because the deeper kind of acceptance and strength take some time. It can be immensely helpful to meet with a qualified counselor, who can help you through this acute phase. It is also fortunate when you have a supportive friend or caretaker or partner who truly understands and walks with you through this phase. But even if you are on your own, it is still possible to face this stage with all your tears and fears, and make out of it alive and stronger. I would like to share the 8 strategies I found helpful. Most of these strategies are long-term tools that can aid dealing with this chronic condition through life. Just the finer details keep evolving; the essence of the tool remains the same.
8 Strategies that Helped my JHS
I thought of all the things that could have been my diagnosis but are not. I also felt ashamed and selfish because there were people dealing with these diagnoses, and I was trying to rejoice in not having those conditions. But the truth is that right then, I needed to control my thoughts and deal with the overwhelming emotions I felt. I tried to replace the negative thoughts with positive ones. Do not try to block the emotions that are flooding your mind. Acknowledge and feel the negative emotions, face them and you will overcome them.
I researched and read up all the articles and books I could find on JHS. I continued with the physiotherapy regime I was following, mainly mat based pilates. Take up the kind of therapy your doctor recommends and what you are comfortable with. I would not suggest joining a yoga class right away and will write my suggestions about yoga in a future post. Pilates and yoga are usually comfortable and safe to follow. Many people benefit from reading self-help books on dealing with chronic pain. Share your diagnosis along with literature on JHS with close people who deserve or need to know.
I felt thankful for many lifestyle and career related decisions I had taken in the past when I found myself unable to deal with the pain anymore. Those decisions were instinctive back then, but now they were validated. I felt relieved that my relentless anxiety problem was not just an “attitude problem”, but had a deeper connection to my disorder. I felt thankful to the rheumatologist for taking me seriously. I felt thankful that the disorder was not life threatening and imagined the future was a gift I had received. I could now make the future better than it would ever be without the diagnosis. I felt grateful to the people who had helped me.
I felt empowered that I knew enough to ensure that my child’s condition will be managed differently to how mine was. I was looking forward to doing all that needed to be done in order to make my body stronger and to manage my pain better. I looked forward to actively manage my anxiety problem instead of trying to suppress it. I looked forward to spreading awareness about hypermobility syndrome.
Join a support forum or a local support group if any, it can be healing to meet people who are supportive and who “get it”. I drew courage from meeting people who were dealing with the disorder and leading meaningful lives. I felt less lonely in this strong and abled world that always seems to me filled with joggers and strong and playful parents.
Let go of the resentments. In my case, they were the doctors who had implied I was over-reacting. People who do not understand, because the truth is that only the people living it and their care-takers really know the challenges each and every moment and activity of the day bring. Family, friends, relatives, colleagues… no one really understands. I cried a lot over all the hurts and reached the stage of forgiving them. Finally, I forgave myself, for being the inadequate mother that I was. We all have things for which we have not forgiven ourselves; each of us has that bag of guilt.
Write a private journal in a diary or on the computer (I use Red Notebook). Some may like to write an open blog; I drew strength from many such public blogs. It is very helpful and healing to write, even if you cannot continue in the long run.
8. Religion and Spirituality:
Praying and meditating can be helpful to those who believe in them. They help you to feel peaceful and to find strength. I found mindfulness meditation immensely helpful, as I was already practicing it since many years.
Those weeks after I was diagnosed were filled with shock, despair and sadness, but I made it through. I am now officially one of those people living with JHS the best they can. How about you, how did you deal with the diagnosis?
By: Karin (read more about ME here)