When you are newly disabled or just starting to realize that you have a condition that will have long term effects on you, it’s important for you to understand what you have, how it works, and what your loved ones may be able to do to help manage your situation.
This isn’t necessarily easy, as you are also trying to adjust to this huge change in your life, and are working on figuring it out for yourself.
However, people tend to be pretty uncomfortable with the unknown, and your loved ones most likely want to help you, but don’t know how.
The sooner and more easily you can share what you have, how it works, and how your loved ones can help, the less time and energy is lost to the fear and worry that often accompanies these injuries, illnesses and symptoms – and the more likely you are to get the support you need, when and how you need it.
Why do you need to explain?
The need to explain your condition is one thing, but the actual explanation process or even just finding a diagnosis is also hard, and medical language is often difficult to explain using everyday words. That also adds an aura of mystery to your condition, and is more for you and your loved ones to process.
It’s also hard to know what to say when you have an incomplete diagnosis, and it can be very difficult to quickly share your condition story without it becoming the prime topic of conversation.
Socially, having your condition be THE topic you talk about is mentally and emotionally exhausting for you and your friends -until it becomes boring, which is also not fun.
It’s important to develop a succinct and accurate description of what your condition is or does – that you can share comfortably, and use as a brief explanation. When it is expressed in a confusing way, it becomes the prime topic of conversation. It’s not always easy, but it will help you a lot in social situations. You don’t want to be viewed as ‘that person who can’t stop complaining'(which is how people might hear your explanation), or as obscessive about the topic.
At the same time, you are going to need to spend time processing your condition, understanding it, and thinking through the implications. You likely will have some conversations digging into your condition, and that is perfectly fine and healthy.
There is also a tendency of many people to want to ‘fix’ disabling conditions, and so they hear you mention it and want to suggest a treatment or ‘cure’ that they heard about(frequently with references to a distant relative or a friend of a friend having the same thing and the miraculous results of the treatment they can’t quite remember the name of).
This is generally well-intentioned, but it’s bound to be frustrating, unhelpful, and bringing the focus back to your differences from the group.
I want to talk about what to focus in on and how to give that short but useful explanation that won’t derail the conversation(at least not often).
Understand the mechanics of your condition(if you have a diagnosis)
If you have a diagnosis you likely had the doctor tell you how it works or what the process is like, at least in vague terms.
You also are usually told the name of the condition you have. With that you can do your own research and can find multiple descriptions of the condition, its history and its effects.
You want to know this stuff anyway to better take care of yourself, so just gather that information and then think about how to explain it to your friends and family members.
There may be an illustration or description that gets to the heart of it or which created your ‘ah hah’ moment when you really understood what you have. Use that. Play with that image or visual or description until you can comfortably explain it in one or two sentences.
To give you an idea, my short pitch is ‘I have a stress-induced movement disorder‘. This maintains my privacy, does not give them a diagnosis to look up(useful if your condition has a lot of bad information or stigma attached to it), but does get across the point that I may have some kind of movements, I don’t have full control, and it’s more likely if I feel stress.
In places where I want to share my diagnosis, I will make statements like ‘I have Functional Neurological Disorder(FND), which is now considered a neurological condition, but when I was diagnosed it was considered a mental illness and known as Conversion Disorder.’
I also may describe my symptoms because FND has widely variable symptoms ‘My symptoms express primarily as unexpected or unusual movements. It can affect any muscle or group of muscles in my body.’
This gives people information to look up so they can know what I have, and gives the impression that FND is the more accurate term, and that there’s a history to the naming of the condition.
There is, of course, a lot more information, but this gets the point across without me being overly vulnerable or oversharing details that others don’t need or want to know.
Al had an acetabular fracture. Technically, that’s all people absolutely need to know – that he’s healing from a severe and unusual break. Sometimes we do shorten it to ‘shattered his hip’
An injury like that on somebody relatively young does raise questions, so we often expand the explanation – first to ‘he has osteoporosis‘(which is also strange – and took about 4 months for the doctor to test for), and now we know at least part of the cause of the problem is ‘he has pernicious anemia‘(it took 2 seeing two different endocrinologists and an additional year to learn that one). We are uncertain if there is more we need to explain, but that’s what we know.
His explanation has had to change over time to reflect what we learn, so now, we can make statements like ‘Al shattered his acetabulum(the socket part of the hip joint) a year and a half ago when he slipped. We’ve since learned that he has osteoporosis, and it looks like the cause is a form of malabsorption – he has pernicious anemia(an autoimmune condition) which keeps his body from absorbing B12 properly.’
If we want a simpler statement, it could be ‘Al shattered his hip joint – his bones are much more brittle than they should be. It looks like he has trouble absorbing B12, but now he’s getting B12 shots so he should have stronger bones in the future.’
This is not rolling off my tongue as clearly or reliably as my explanation of my condition, but we’ve only had a few months to absorb all the details of his situation(if those are all the details), and I’ve been managing mine for years.
This does take practice, and as I’ve indicated here, it may also need some edits over time as you better understand what you have and why you have it.
The important thing is that you identify the name(if you are comfortable with others knowing that detail) and a brief idea of what to expect – in my case muscle movements, and in Al’s case, weak bones and hip pain.
If you want them to know the name they can then do their own research to get more details if they are interested. Again, you are going to be asked, repeatedly, ‘what happened’ so it’s nice to have a short answer that removes the mystery and lets you shift the conversation if you want to.
Explaining without a diagnosis
Not having a diagnosis is frustrating. There are more unknowns and uncertainties and there are few, if any, mechanics to explain. What you can do, though, is talk to your friends about your symptoms, and how to manage them.
I spent about 6 months trying to get diagnosed. What I knew during that waiting time was simply that I was having these muscle jerks at times and that I constantly felt like I needed to pee. The movements appeared to maybe be stress-related. (right there, stress-induced movement disorder)
That was it.
So I kept my friends informed on my symptoms and worked with them to minimize the interruption to our lives and time together.
For example, I let them know that I was feeling this need to pee all the time and that it was frustrating for me, and I was sure it also frustrated them(being vulnerable and sharing the experience).
I made sure to go to the bathroom right before we’d sit down to watch a movie, and if it was a larger group of friends, I’d just go when I needed to. Because it was one of my primary sources of discomfort, I did share this, even though it is relatively private and taboo topic. I did not tend to share that I also had leakage issues at times(I was wearing pads), and focused instead on the urgency as an explanation for why I might seem distracted at times and why I kept going to the bathroom.
In Al’s case, all we knew at first was that it was a severe break. That was what we shared. As we better understood the details, we shared them out to interested friends, and let the description grow as we learned more, as you see above. We focused on what that meant for him and for his friends.
‘He’s staying in the hospital’ ‘He needs to have his hip surgically rebuilt’, ‘he can’t put weight on his leg for 10 weeks’ and so on. We weren’t secretive, but just shared the highlights and our next steps or his limitations
Don’t let your condition be your only topic of conversation
I think it really helped that I was willing to talk to my friends about what was happening and what my next steps were.
I did my best to make sure I also asked my friends how they were doing and what was happening in their lives, so they knew that I cared.
If all you talk about is your symptoms and condition, you may quickly alienate your friends.
It is a topic you have put a lot of mental energy into, and one you need to think about a lot. However, it’s more apt to be uncomfortable for your friends as they are still processing your condition.
Also, friendship is a two-way street, so the more you can do to make sure your friend is able to share his or her experiences and thoughts, the more nurtured they may feel, which will help them want to keep talking with you and reinforce that you are still their friend and still care about them too.
I am not saying that you shouldn’t talk about what’s happening at all, but simply to remember that it is very top of mind for you, and that isn’t the only thing going on in your friends’ lives – so just be sure that you are keeping up with your friends too.
Conclusion: Communicating about your condition
You and your loved ones are likely to be processing the information about your condition at the same time – which means that you all are facing a mystery together, but you are most directly affected by the information and you are going to be the primary source of details.
The less mysterious and scary your condition seems, the less ‘othering‘ it is, and the easier it may be for your friends to adjust.
The better you can explain your condition, the more you can help your friends understand what you are dealing with, how they may be able to support you, and how you are doing with the whole process.
You don’t need to tell people everything, and you can omit details that are too personal for you to feel comfortable sharing as long as they are not the primary issue. Also, your friends can’t support you if they don’t know what’s wrong – so if you don’t share a symptom or problem with them, they can’t empathize, support, or help you with it.
The better you know how your condition and your body works, the more able you will be to explain it to your loved ones in a satisfactory way.
Finally, your symptoms or condition isn’t who you are. You need to have space in your life and conversations to talk about other things that are important to you and your friends and family.
