It is difficult to help a person with an invisible disability compared to, say, a person with something visible and easy to relate to, like a broken arm. In spite of being a person with an invisible disability myself, I am not sure that I would really know how to help a person with an organ transplant. I have seen the confusion in the eyes of people who love me or care for me; they truly struggle to understand what it means for me to have Joint Hypermobility Syndrome (JHS). Many of them remember the time I had been incapacitated with intervertebral disc prolapse for the first time, and ask if it’s my bad back acting up. Their inquiries about my health are always, “How is your back problem?” I don’t quite know where to begin to tell the people who are not immediate family, that it is no longer just my back.
In simple words, JHS affects a certain protein of the body, and that protein is a structural component of many organs of the body, from the skin to the cartilages to the joints to the bowel. I explain to my friends asking them to imagine I am a humanoid robot. And then imagine that all the other robots are made of steel. But I have thin aluminum instead of steel. Or imagine a house, built using poor quality cement. To compensate, I can try to reinforce the plaster, put up some external support, but the structure essentially remains weak.
There are some excellent articles and books that are not too long and can help family members understand what a person living with chronic pain and JHS struggles with. A Guide to Living with Hypermobility Syndrome: Bending without Breaking is an insightful book that combines the author’s autobiography with medical literature and shared stories of others that is helpful to understand JHS. But You LOOK Good! (How to Encourage and Understand People Living with Illness and Pain) is a touching book that presents in a very readable way, what people living with ongoing illness (not just JHS) and pain struggle with. Both are excellent books to be read by close family and friends, in order to understand what a person living with JHS needs from them.
For those who are unable to read these books, there are two short articles that I particularly like, which are educative and easy to read. “Joint Hypermobility and Joint Hypermobility Syndrome” written by Alan G. Pocinki, Washinton, is meant to be a short guide to be shared with friends and family. The other is “Living with the hypermobility syndrome”, which was presented by Sarah Gurley-Green, at the 1999 Congress of The European League Against Rheumatism. I cried reading Gurley-Green’s article because there are insightful things in this article that I can relate to, from my own life. For example, everyone is quick to advise me to lose weight, without wondering why it is difficult for me to lose weight.
While it is easily imaginable that a person with JHS will have problems with lifting, bending, standing, or things related to the joints, there can actually be numerous other things that they are struggling with. There might be associated disorders of the nervous system, problems of heart or blood pressure regulation (cardiovascular system), conditions of the gastrointestinal tract, and mood disturbances. A major problem that persists all day and even through my sleep is pain, because my muscles and joints are being overused or misused all day. The structural weakness leads to chronic injury. The person with JHS is in varying degrees of continuous pain. Remember, when you had a sprain that made you gasp. You felt out of breath dealing with the pain. What if the pain never went away, and clung on to you forever? You would be lonely, tired, depressed and numb in your mind.
Personally speaking, my weak wrists and hands translate into difficulties with typing, carrying a small bag of groceries, lifting a pan of cooked food from the oven, writing with a pen, pushing and pulling heavy things, opening tight bottle caps, difficulties in child care and carrying baggage or placing them on baggage belts. I cannot stand in a bus because my body sways too much with the movement. As I hold on tight for dear life, I hurt my arms and wrists, and the sway aggravates my spinal pain. I cannot sprint to catch a departing bus that is a few feet away, and the bus driver looks at me and sees a person unwilling to hasten her pace, and leaves without the consideration he would have shown a person in crutches. I cannot break into a jog even if the traffic light has turned red, or there is a vehicle speeding towards me or my child has fallen down and needs me. I sometimes don’t have a limp, so I look like I am just walking slowly in spite of there being a need to hurry up.
In the winter, the person with JHS could be in extra pain or they might be scared of the pain the cold weather is about to bring. I find it very exhausting to walk in the wind, and think many times before venturing out into the wind. A person with JHS is sensitive to the ergonomics of the workstation. They may have difficulty getting out of the bed in the morning and changing position in the bed at night. They may have an anxiety problem, which along with the relentless pain can lead to many personality changes and problems at the job and family fronts. Pregnancy with its hormones and changed axis of body weight distribution brings aggravation of pain and many new problems and is frequently one of the most challenging periods of the life of the woman with JHS. Postpartum period is equally challenging, and every month, the premenstrual period is as painful as a mini pregnancy.
The most important thing I had been seeking (next to a miracle making me completely healthy!) was validation, my loved ones to accept that I am really in this much pain as I say I am. I have seen friends give looks of frank disbelief or mild skepticism. So, start with validation. Friendly and caring colleagues could help a person with JHS in taking frequent breaks from a continuous body position and carrying heavy things. Willing friends and relatives can help with laundry, child care (especially if the child is sick) and grocery shopping. There are good days and bad days, and make sure the person with JHS knows they can get your help on bad days, be it with chores or something else. And even if you cannot help the person in any way, you can refrain from being unkind by not saying things like, “Are you having PMS?”, and “Why did you have a child when you have a genetic disease?”.
Are you living with JHS? What are the challenges that you face, which you think others have no clue about?
By: Karin (read more about ME here)