Getting a diagnosis of Hypermobility Spectrum Disorder

We all have certain a-ha moments in our lives. An enlightening realization. A shocking revelation. An overwhelming insight. For me it was a devastating diagnosis at the age of 38.

Although being told that you have a disorder without a cure is not exactly a thrilling experience, but I distinctly felt the kind of rush I used to feel decades ago when Hercule Poirot identified the murderer in my Agatha Christie novels. Gotcha!

The rheumatologist told me that I had Hypermobility Syndrome (Hypermobility Spectrum Disorder or HSD). 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.

The first week following my diagnosis with hypermobility spectrum disorder was both challenging and exhilarating.

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 HSD is that deep down they know there is something far more wrong than the pains they can name. Due to the multi-systemic nature of the disease, these people usually have a large number of health issues, which are often not validated by the doctors, leading them to be considered lazy, "too delicate," "hypochondriac," "hysterical," or plain fakers by their families and friends.

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. 

I know the face of my adversary now.

I floundered

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 even end my own misery because I am a mother to a little child. Child. Will my child lead a life of pain like me? What about old age, how much of a burden will I be to others?

Thoughts like this 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 I will now never have.

Find an anchor

In such periods, it is useful to find a focus or support to hang on to because deeper acceptance and strength take some time. It can be immensely helpful to meet with a qualified counsellor, who can help you through this acute phase.

It is also fortunate when you have a supportive friend, caregiver, 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 come out of it alive and stronger.

8 Strategies to find your footing post-diagnosis

I would like to share the 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. 

1. Pragmatic Positivity:

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 manage the overwhelming emotions I felt. I tried to replace the negative thoughts with positive ones.

I don't encourage toxic positivity. On the contrary, I would advise you to not try to block the emotions that are flooding your mind. Acknowledge and feel the negative emotions, face them (if possible through therapy), and you will overcome them. During this period, you will experience different stages, similar to those of grief.

But, do try to open your eyes to all that is precious in your life.

2. Proactivity and Advocacy:

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. Pilates are usually comfortable and safe to follow.

Proactive approach hands you back the control you have lost over your life. Many people benefit from reading self-help books on dealing with chronic pain. Share the diagnosis along with literature on HSD with close people who deserve or need to know.

3. Gratitude:

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.

The practice of gratitude is known to be a powerful mental well-being and healing technique, and I believe that my innate tendency to be grateful about many things in the course of the day has helped me through my life. This is a practice and a mindset that can be cultivated.

4. Set Goals:

I felt empowered that I knew enough to ensure that my child’s condition will be managed differently from 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 managing my anxiety problem instead of trying to suppress it. I looked forward to spreading awareness about hypermobility syndrome. 

5. Connect:

Join a support forum or a local support group if there is one; it can be healing to meet people who are supportive and who “get it.”  I drew courage from meeting people online who were dealing with the disorder and leading meaningful lives. And I felt less lonely in this strong and abled world that always seems to me filled with joggers and strong and sporty parents.

6. Forgive:

Let go of the resentments. In my case, they were the doctors who had implied I was overreacting. People who do not understand, because the truth is that only the people living it and their care-givers 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. Forgiveness and self-compassion are powerful tools to heal yourself.

7. Journal:

Write a private journal in a physical diary or on the computer. Some may like to write an open blog; I drew strength from many such public blogs on this condition. It is very helpful and healing to write, even if you cannot continue it in the long run. Journaling can be a part of professional therapy techniques too.

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 Buddhism, yogic breathing practices, and mindfulness meditation immensely helpful. If you are non-religious, you can still find these mind management techniques useful to not only overcome the grief of the diagnosis, but also to manage the chronic pain that is a key component of this disorder.

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 HSD the best they can.

How about you, how did you deal with the diagnosis?