Guiding others towards a healthier understanding of your condition

Healthier interactions start with the recognition that you are, indeed, human too. Just because you have some form of disabling condition or identity doesn’t make you more(or less) of a person than you were prior to your symptoms or diagnosis.

Unfortunately, both you as the person managing your condition, and your family and friends need to navigate this process and find a new balance in how they support you while respecting your independence.

The process is often messy and takes time, but there are things that you can do and say to help those who love you to readjust to your needs and respect your boundaries.

Two common ways people react to a disability they don’t understand: denial and assuming incapability

While there are many variations and permutations of how people react to your disability, it generally is about fear, power, or ignorance.

A natural part of human history is the fear of the ‘other’ or the unknown. For many people, despite all the information out there, disabilities in general or yours, in particular, are things they don’t know or understand(or haven’t bothered to learn about).

In some cases, they convert this lack of understanding into simply ignoring or denying your condition, other times it’s expressed by presuming you are completely dependent and incapable. There often may be severe discomfort and tense moments as they flip between these extremes, or try to find a more moderate approach.

These all require work from you or an ally to correct, but if these misunderstandings are mild or only from one or two people, or come from a loving intent, they often can be corrected with some gentle(or not so gentle) nudges on your part.

You don’t look sick and other denials

Denying the existence of your disability or the limitations that go with it is something that a lot of people fall into.

Sometimes it’s a lack of understanding of the mechanisms or process of your condition, and other times it’s about a dislike of change and a wish that things could be like they were prior to your diagnosis or triggering event.

Both of these are things we often experience ourselves early in the process: I know that before and during my diagnosis with FND I didn’t want to admit that things weren’t okay, and I didn’t want to think of it as a chronic condition.

Denial is a very natural response, and others aren’t living in your body 24/7 so can’t intuitively understand how tough the situation is for you.

Shortly before my sisters turned 17, one of them received a serious brain injury while caring for a horse.

It took my family months to realize how severe the damage was.

My sister was very intelligent and hid her deficits from our family as long as she could because she didn’t want to admit even to herself how severe things were.

It took months more of treatment before any of us fully understood the extent of the damage. By the time we did, she already had recovered a bit.

Despite constant nausea, coordination issues, and an inability to string together the meaning of a question, she attended her classes for almost three months without my family or her teachers realizing she had more than a temporary concussion.

Once she started taking tests and needing to turn in papers, the truth came out, but to this day, I am impressed by how well she was able to use her intelligence to hide the severity of her injury.

I am not saying this was a good choice on her part, and it exhausted her and delayed her evaluation and treatment, but I remain impressed that she was able to mask things so well.

For most of us, by the time we’re diagnosed, it’s because things got so severe that we needed to get diagnosed, needed to be seen.

Being seen and recognized is very important – both for our positive and negative attributes – and having our conditions ignored to our detriment isn’t healthy.

As I mentioned above, we often try to deny or minimize our symptoms or condition until we just can’t anymore -and when you think about how frustrating and hurtful the process can be for you as you go through it, it makes sense that others also don’t always want to admit that you aren’t as healthy or strong as you all had wanted to believe.

Greetings of ‘you look great’ or ‘what happened, you look terrible’, or other responses that either deny the severity of your condition or the new needs you have are not surprising and often echo your own adjustment process that was forced on you by your situation.

Treat these comments or questions as an opportunity to educate your family and friends about how you are impacted and what they can do to be more helpful and help you participate as fully as possible.

Treating you as fragile or incapable

The other response, especially after a severe or sudden attack or accident is to assume that you’re a complete invalid incapable of doing anything for yourself.

People do understand ‘sick’ so especially if there’s a sudden event(like a broken limb or a heart attack or stroke), people have difficulty knowing how to treat you, and often went through their own minor trauma over your situation.

They may struggle with this image or idea that now you can’t safely do anything or shouldn’t be invited to go to things you may not be able to handle.

Technically, there’s nothing I absolutely can’t do with my Functional Neurological Disorder(FND) symptoms. However, there are things that I will only do when I’m having a good day, or things I have decided aren’t worth the effort.

For example, I no longer try to drive because my symptoms often make that challenging, and I got tired of being stuck at my destination until I could be met by two drivers(or leaving my car random places until it could be picked up).

However, if somebody didn’t invite me to something because it could only be reached by driving, I would be upset.

I have friends and a partner who could drive me to a location, or I could take public transportation as close as I could and then take a taxi or lyft the remaining distance.

If people are talking about demanding activities, let them know either if that’s something you would be interested in, or about ways that technology or stubbornness has allowed people with disabilities to participate in that experience.

For example, there’s adaptive skiing, the Paralympics, and other events specifically designed for people with disabilities to participate in sports.

Your loved ones are going through their own process of acceptance and managing boundaries, and unfortunately only you know what you can and can’t do at any particular time, so it becomes your responsibility to teach them what your limits and boundaries actually are now so that they can also make the adjustment to their expectations.

Helping others adjust to your needs

Whatever the reactions, you can make sure that your actual needs, boundaries, and abilities are as clearly expressed as you can, and as constant as you can manage(especially for people you don’t see all the time).

Al‘s family is less used to managing disabling conditions and leans towards the ‘made of glass’ idea, but they’ve been steadily improving in that respect.

His treatment comes from a place of love, so we just remind them that Al isn’t as fragile or needy as they fear.

That happens in a lot of different ways.

One is simply the passage of time – as time goes by without him being injured similarly while he’s continuing to live his life, they are recognizing that he isn’t as fragile as they feared right after his injury.

Also, we do our best to be consistent with his needs. An extra cushion is useful, help on the stairs is not.

Al usually just gets what he needs on his own, reaffirming his independence and capability, and, of course, I make sure to not fuss or make a big deal about his symptoms either.

Through all these things, we’re carrying through on a single message: Al’s got it.

He has recovered enough to need no special treatment no extra care, and he has and can continue to make those determinations on his own.

My parents and siblings actually had trouble with my FND diagnosis as first because in my case, my symptoms were extremely inconsistent, and because they mainly increased in response to things I didn’t want to do anyway.

I remember my mother’s frustration when I’d seem to do pretty well most of the day, until the moment she requested that I wash the dishes, at which point, I’d start shaking or otherwise becoming symptomatic.

Within the context of the condition it did make sense -I was adding the stress of an unwanted task, but it felt to her like I was using my symptoms to get out of my responsibilities.

It took time for all of us to fully absorb when I was symptomatic as opposed to simply not wanting to do something.

Considering that there’s still a lot of misunderstanding around the disorder and when I was first diagnosed it was presumed to be a mental illness built around escapism, I understand how frustrating it all was.

While you have learned about your own limitations, others weren’t as intimately involved in that process, so it’s your responsibility to help them understand what is and isn’t okay for you, how likely it is to change, an estimate of how often it might, and that you can be trusted to evaluate your own ability to do things.

While our symptoms(and capabilities) definitely can vary over time, the message of ‘I know my limitations’ helps a lot, as it reminds loved ones that you are an adult and self-aware enough to know what you need, and capable of managing those needs, taking that part of the responsibility away from them.

The power of setting and maintaining boundaries

My FND symptoms can and do affect what or how much I can do on a given day, but I often can make choices in how I spend my physical, emotional, and intellectual energies to allow me to manage whatever I need to.

I have learned to better understand my limitations and needs and to express them clearly when necessary, and my family has learned that I generally know where my limits are, and can be trusted to do what I say I can, and not be able to safely do the things I say I can’t.

There aren’t accusations of me faking it or of me trying to get out of things, simply an acknowledgment that I do what I can as I can to support those I love.

By trusting my self-evaluation, they neither ignore my symptoms, nor assume my limitations, so I am able to do as much as I can or want to do while they provide me with an appropriate level of support as needed.

It took quite a bit of communication, trial and effort on all our parts to reach it. Fortunately, previous experiences with other conditions had prepared us all for these adjustments, and while it did take time, everybody was ready and willing to work with one another to redefine expectations within our household.

I feel very blessed that individual family members have been willing to respect my boundaries.

Expecting and managing variations in responses

Al and I also have dealt with family who treats him as if he’s extremely fragile and so unable to care for himself.

Right after he broke his acetabulum, we were all in shock, and for a while, he did need some degree of coddling and protection.

Through much of his healing process, he’d occasionally be treated as if he was still unable to do anything.

Using stairs was a struggle at times, and I actually verged on overprotective there. I would often position myself behind when he was going up or in front when he was going down, so if he did slip, I was there to break his fall or steady him.

I tried to just happen to be right in front or behind him, but was careful not to do more than that.

Others tried to help him with the stairs when he no longer needed it, escort him to the car when he could walk there fine, and otherwise act as if he was weaker and more fragile than he really was.

I’ve noticed that some family members are now jumping between not thinking about his needs and being overly concerned about the risk of injury.

They are trying to back off and relax but aren’t always able to.

More recently, he offered to help with a small building project, which would require him to kneel on the floor.

He kept trying to explain that his biggest challenge would be getting into the kneeling position, after which he’d be fine, and that he could get himself back up again.

Eventually, he just did it, and in doing so, showed that he was able to evaluate his abilities appropriately and that he knew his limits.

Each time he does this, it’s another step towards his family’s better understanding of his disability and how he can manage it.

Being clear on what is or isn’t needed

The main thing you can do to help your family and friends adjust to your needs is to be as clear as possible about what will and won’t help you.

For example, my sister is managing visual and aural sensitivity – so loud noises, bright lights, or visually complex clothes(like certain stripes, cross-hatch or repeated patterns) can be tiring for her.

So, for Christmas I made sure not to wear clothes like that – jeans and a red top worked great, but this wasn’t the day to wear my Christmas print shirt covered in stylized snowflakes.

I don’t, however, need to try to help her do anything or maintain her balance or worry about any other needs – she’s got it, and if she needs anything extra, her wife handles it.

My mother has a history of asthma so I wouldn’t wear any heavy perfumes, as they can set off an asthma attack for her.

With my FND symptoms, I mainly have a list of how to not act. I don’t need people staring or asking if I’m alright every few minutes.

If I get symptomatic, I may joke about it and I’m good with other people mildly joking about it as well. I don’t need more than that, just an acceptance that I may have symptoms and it’s okay.

For Al, it’s about being able to sit in a comfortable chair(preferably cushioned), and for him to be able to switch between sitting and standing.

My step-brother is managing long term damage from a brain injury. He needs a variety of supports, including a wheelchair, reminders to use the bathroom and assistance with toileting.

He does participate in family conversation, joke with us, ask questions, and certainly has preferences and desires of his own. He has an aide along for the holidays to help with the essentials, and we make sure to include the aide in our celebration.

Each piece of these things has been explained or strongly implied, so I know what will help my family celebrate together. There are things that I need to do to help make others lives easier, very reasonable and well-articulated.

Conclusion: however your condition affects you, you can help others know how they can truly be helpful

You deserve to enjoy time with family and friends, and to have your needs met while doing so.

While the first and most important step is figuring out what you need, it’s also very important to express or explain those needs.

This helps others find their new balance and know how they can be helpful, not over-protective or ignoring your actual needs.

Often, poor responses occur because others either don’t want to believe that you’ve changed or in their attempts to respond to those changes have gone too far down the track of assuming incapability on your part.

Helping them balance these conflicting goals is, unfortunately, often an extra responsibility that you need to shoulder.

The better you understand your limits, capabilities, and needs, the easier it may be for you to explain them to others.

Just like when your condition hit, you didn’t want these changes, they often don’t want them either, but are less aware of precisely what you need(and don’t need).

Be clear about your capabilities and needs, and by pushing back when appropriate, you can help your loved ones to understand how you all can enjoy your time together.