Revealing your diagnosis
Working out who, what, why and when to share your hypermobility diagnosis can be very confusing, and the cause of a lot of anxiety for some people. So let’s run through the whos, whats & whys – you have to decide on the where! When we are hypermobile, especially when we are wearing braces, splints or taping, using mobility aids or assistive devices, people are naturally interested. Inquisitive even. Sometimes their questioning comes at an okay time. Sometimes the inquisition occurs while we are in the throes of an internal battle to merely be ‘okay’ with our condition.Where you are at on your journey will help you work out how much you are about to share with ‘the inquisitor’. When we share with people about our hypermobility, there are few significant considerations:
- What is your relationship to the person you are talking with?
- How much information do you need to share/ what do they need to know?
- How much are you comfortable sharing?
These three things are essential to keep in mind when it comes time to reveal your hypermobility!
Cat. #1: Acquaintances. In any given social encounter it is appropriate for us to filter our interaction with others. We don’t share everything with strangers or acquaintances. Acquaintances we know superficially, therefore superficial information is all that is required. Many people feel uncomfortable making up a story. I try not to do this, although some occasions just seem to call for it. For acquaintances, I recommend giving a simple “I sprained my wrist, but it’s OK, it’s getting better”.
Cat. #2: Frequent path-crossers. For someone who I have met on multiple occasions, who has noticed and asked about my splint/brace/taping I might give a little more information: “Oh, I have a genetic condition which causes my joints to dislocate easily”. Giving this kind of information usually gets them talking if they are compassionate or genuine about what’s going on with you. I will warn you though; you need to prepare yourself for the questions AND the sympathy that follows: “Oh you poor thing, that must be very tough”… “Wow that must be so painful”… and the dreaded “I know someone else like that” response.
Cat. #3: Connections. For someone that I see and connect with on a daily basis or whom I’m developing a relationship of any kind with, I feel it’s necessary for them to know the truth. Situations like this are when I have the “I have a chronic health condition” talk. The “this is not going away” talk. The first few times you tell someone about your condition it’s usually pretty hard and can be quite emotional. Emotional is OK. Emotional speaks of your reality.
The more times you share with different people, the easier it becomes to admit that you have a chronic health condition which causes you pain and a myriad of other symptoms. Another warning though, don’t tell them everything all at once.
There are layers to this conversation.
In my experience, people cannot handle the entire truth all at once. Bite size pieces are good. They can digest them without having a meltdown. Remember, this is a person you are developing an ongoing relationship with. You don’t need to tell them everything right now. You will see them again and can continue the story. It’s not a “blurt it all out and get it over with” kinda moment (if it is, you’ll probably freak them out!).
How much do Cat. #3 need to know? The answer is all dependent on your relationship to the person and the context of your relationship. If we are talking about the school environment, someone at school should know what’s going on in case something happens while the school is responsible.
At work, I believe telling at least one colleague (perhaps not a boss/manager) about the severity of your condition, so that someone in the workplace knows what you are dealing with, but also in case of an emergency. With friends and partners, this is up to you to decide.
Only you know how much detail you are comfortable sharing. The older you get, and the more you trust the person who is hearing the information, the more comfortable you will get with sharing.
Michelle is a Senior Occupational Therapist working solely with adults with hypermobility and related conditions. Michelle is the owner of Hypermobility Connect, an online platform for people with hypermobility to connect with resources, health professionals & each other. Michelle practices OT in her private practice and provides education to health professionals relating to hypermobility conditions.