Something both Al and I have had to manage is different responses by different family and friends to our conditions and situations.
I think most people with disabling and/or chronic conditions have experienced these stresses: family members or friends who may insist that it’s nothing or that you are making up your health problem, other ones who suddenly treat you like you’re made of glass and may break if they breathe wrong.
There can be people who ignore you altogether, and others who actually treat you as what you are: a fellow human being.
Your responsibility is to protect yourself from emotional injury while enjoying your time as much as possible.
The holiday season tends to be when we most often are expected to interact with family members or friends who we don’t see regularly, and it’s best to be prepared and have a plan to help ourselves if we get blindsided by somebody’s response to our presence.
An associated consideration is recognizing if other people’s behavior is something you have the ability to adjust through conversation, or if they are so set in their ways that simply interacting with them is an inherently toxic situation.
People who minimize or disbelieve your needs
I remember after Al’s brain injury, we both were struck by extreme ablism on the part of a family member, who managed to insult both of us in one statement. He was telling Al that his brain injury was ‘all in his head'(while technically true, he intended the statement to mean ‘made up’ or ‘controllable’, which wasn’t at all the case), and that Al had ‘nothing holding him here'(ignoring our relationship, which at that point was over a year in length).
It was hurtful, and while he may have meant it well(Al didn’t have a house or other major financial investments and in theory, since I’m on disability we could both move wherever), it came across pretty negatively and made it hard to have a productive exchange of ideas with this person.
Especially with relatively invisible illnesses like FND and most mental health conditions(as well as autoimmune and other systemic conditions), it can be hard for people without disabilities to truly understand or recognize the depth of the damage these conditions can cause, not only physically but mentally and emotionally as well.
After Al’s brain injury he also was repeatedly told by family members that didn’t get it that he could return to work immediately or drive immediately after his accident ‘if only he was willing to try’. While he did eventually drive again and he did eventually find work again, there were times where these actions simply weren’t safe.
An extreme example of denial for people with food sensitivities would be that person being offered food they are allergic to, or the family preparing food that isn’t safe for them while insisting that they can’t bring their own food.
Depending on how many family members feel this way or how strong those feelings are, it can be anywhere from slightly uncomfortable to completely toxic to spend much time in this situation.
Self-defense against disability deniers
If you are only dealing with one or two people like this, you may still be able to have a wonderful time visiting your family or spending time with friends.
See if you can talk to other family members about these issues and have them either explain the situation to these unaware family members(ideal) or have them help protect you from being alone with them.
This can happen a few different ways, depending on your family’s celebration and dynamics, but things like not sitting by them, being called away if they start making you uncomfortable, or pushing back on statements they make are all possibilities.
If most or all of your family or friend circles is like this, that’s when you need to decide if it’s worth going.
You’re likely to have a fight if anything related to your condition comes up and it’s likely to be damaging to your self-esteem to be surrounded by people who refuse to understand your condition and your perspective.
This may be a toxic environment for you, and you may want to look into other options, like going to a different event, or finding an alternative way to celebrate your holiday.
If you do decide to go, recognize that few people will understand the situation and your safest bet is to hide or minimize your issue and not mention it to the people around you.
You may be okay if it’s a short-term situation, but please protect yourself the best you can – this isn’t an ideal emotional space for you to be in.
You also may want a friend who understands to either accompany you or be available to talk with as needed for moral support.
People who over-compensate and treat you as an invalid based upon your condition
At the other end of the spectrum are the people who end up demonstrating this idea that because you have a disability you are extremely(overly) fragile, and prone to breaking at the slightest little problem or challenge.
They do their best to protect you from any work, any responsibilities, any challenging ideas, out of a belief that you can’t handle these things anymore and your disability makes you completely unable to do the things you could do with ease.
This looks different with different conditions, of course, but overall the theme is the same: you are fragile and must be coddled, protected, and cannot be expected to do anything for yourself.
Al went through this a bit with some family members. After his acetabular fracture, once he’d healed enough to drive again, we’d go to his parents’ house to be greeted on the lawn, with more than enough people to make sure he couldn’t fall going up and down the stairs.
Inside the house, he’d get pillows heaped on his seat(he needed one maybe two), and he wouldn’t be asked to get anything ever – somebody would bring him what he needed, etc.
A similar treatment on the mental illness front might be a refusal to bring up certain topics, or the presumption that the person with the mental illness either can’t(or shouldn’t) participate in conversations.
Sometimes there’s this feeling that everybody is extremely carefully watching what they say.
Often friends and family members can have a hard time recognizing that healing can progress over time, so something that wasn’t possible at one point may become possible later.
People who don’t see you regularly may still be stuck on previous limitations or presumed ones, and don’t bother to ask you to do something that they don’t think you can do.
Finally, sometimes people make strange assumptions about capability.
Just because somebody can’t work regularly doesn’t mean that they also can’t babysit or wash dishes, or solve complicated problems.
Some people equate disabled with incapable, and that simply isn’t true.
Each person’s disability places its own limits on a person’s capability, and others are often surprised how much a person with a disability can do ‘despite’ their condition.
Fighting back against presumptions of inability based on disability
Most of these are matters of good intentions gone wrong. These are people who often mean to be supportive or helpful but just don’t understand what your boundaries or limits are and how you have managed them.
A lot of this can be managed with some understanding and a lot of education.
When you get the support you need, thank people for it, but once they start going overboard, let them know that you don’t need that much help.
If you know or suspect you are being left out of things, find an ally who can speak up about involving you.
Often just having one person willing to give you the chance will be enough to convince others to try – at least if their reasons are built around a fear of you being disappointed or upset that you can’t participate.
The most important thing to reflect on, though, is how much energy you feel like you need to put into these things or these people. Often disabilities limit our friend pools and family time, so sometimes putting up with a little coddling isn’t the worst thing in the world, and some friends or distant relatives simply aren’t worth the effort.
The more central these people are in your life, the more important it is to have them understand what your true abilities and limitations are.
Recognizing toxic situations
Now, if either of our families had been more toxic about it, or if our needs had been greater, it would have been more challenging to do this.
I have heard stories from others about each of the situations I mentioned above – people with food sensitivities having their health threatened by family members, others treated as worthless by family who didn’t understand.
The worse the treatment, the more seriously you need to consider whether you can get the message through to your family or friends.
If treatment like this is part of long-term behavior and you see no evidence of them adjusting or trying to be supportive, it may be time to move on.
People can and do step away from toxic families if they need to, or find new circles of friends.
It’s not easy, but it can be very helpful in that healing process, and lead to healthier relationships overall.
Conclusion: relationships are hard, but recognizing the patterns can really help improve your options
Whether a friend or family member ignores your condition in an unhealthy way, acts overprotective, or shies away from contact due to a lack of understanding, you can learn to recognize the behaviors and the cause behind them, and respond to them.
While some degree of ignorance or fear is understandable and manageable, too much of any of it creates a toxic situation, which you may need to remove yourself from.
The better you understand your condition and needs, the easier it often is to express it to others in an understandable way, and the better chance you have to get your needs met.
However, there is always a point of diminishing returns, where the energy involved in getting a person to the point of understanding is just more energy than you have or can afford to expend.
At that point, you need to decide how far you’re willing to go to be understood, or how many people you’re willing to work on to get the respect you deserve.
Each person has their own points on these fronts, and honestly, each person’s energy for such things varies over time as well.
Think about what you need, and who from, and then decide how many fights you are willing and able to put into being accepted this year or this time and then make the best decision you can for yourself in order to make this holiday one that you can enjoy.