Especially around the holidays, there are a lot of events that you may be invited to, and a lot of events that you may have the opportunity to attend. If your condition is new or has shifted severely, it may be hard to know what events you might actually be able to enjoy and which events may be more trouble than they are worth. Today, let’s talk about evaluating the opportunities and how you decide which activities to participate in, which not to, and how to make sure that you get the most out of what you do participate in while getting the least possible grief about the events that you may elect not to attend.
Consideration 1: What do I want my holiday to look like?
Each person’s limits are different, but the common factor among disabling conditions is that we generally get more fatigued than the average person after shorter time periods and/or take longer to recover from events.
Think about what is important to you and what may be feasible – and do your best to plan ahead so that you can at least participate in the most meaningful parts of the holiday. If it just isn’t the season without a particular activity or food – make sure that you plan to participate, make, or request that essential piece!
By the same token, you are likely to value the long-standing traditions your family or friends have, and making sure you are able to really connect with the holiday feeling is more important than attending any particular event. You just want to make sure that you are able to enjoy the most significant parts of the holidays for you.
You know, or at least have a guess, about your personal physical and emotional limitations. There often are a lot of events late November through early January. Think about what your personal priorities are for celebrations and how you can best manage them.
Al and I do all of our celebrating outside the home, so we don’t have the stress of trying to have our apartment neat and presentable for guests during the holiday season. Instead, we can focus our energy on attending celebrations with our family and friends, and worry about cleaning our place after the holidays.
We can do this because our families live close by and both his parents and my mother and her husband are in the position to be able to host for the holidays.
I am very grateful for that and very aware of the privileges conveyed by that. I just want you to remember, whatever your situation and whatever your holiday traditions, please make plans that allow you to enjoy your most valued traditions.
Consideration 2: Do I want to go?
Do I want to go or do I feel obligated to go is a very important differentiation that not enough people make. Sometimes, receiving an invitation makes you feel that you must attend the event, either out of fear of disappointing the person who invited you, a sense of obligation, or a lurking sense of guilt if you don’t attend.
When you’re living with any form of disabling condition, you may have an automatic ‘out’ for events that you didn’t have before. Pleading ill-health or inaccessibility may be a new and novel option for you, but it is one that many disabling conditions afford – bear that in mind when invited to events.
While ‘I don’t want to go’ is rarely an acceptable response, ‘It isn’t wheelchair accessible’ or ‘I don’t think I will feel up to attending’ often can be.
If you do not want to go to the event, you may want to conserve your precious energy(so many of us are managing fatigue or energy issues as part of our disabling conditions) and be able to rest up so that you can participate in events that you will be better able to enjoy.
The primary exception to refusing invitations is if you are dealing with depression or other issues that reduce your desire and willingness to participate in things – if you find yourself not wanting to go to every opportunity out there, it’s time to examine your mindset and take up at least some invitations and make sure that you are connecting with loved ones over the holidays.
Another thing that might be kicking in is a fear of rejection or embarrassment about your condition. My movement disorder is very responsive to my emotions, so being anxious about my symptoms is very likely to bring them out, as is thoroughly enjoying myself and generally getting tired over the course of the event. Whatever your condition is, and the anxiety or embarrassment over your symptoms may be, you need to find a space for yourself that you are willing to take that risk of embarrassment to enjoy something – otherwise, what kind of a life do you have?
I know I tend to feel more comfortable at smaller events with people I feel safe with. I am less willing to go to events by myself than I used to be, as there is always the possibility that somebody will interpret my symptoms as a call for help and try to rescue me.
People do fear things they don’t understand, so explaining your condition to your host ahead of time or having a companion with you who can comfort you and/or calm others can be extremely helpful. If you really want to go to something, you often can figure out a way to do it, so please don’t let embarrassment or fear stand in your way!
Consideration 3: Am I physically and emotionally able to participate in this event?
If there is an event that either you want to go to or you feel obligated and are willing to go to, your next step is to find out the details and make sure that attending isn’t out of the question.
There definitely are barriers to participation when you are managing a disabling condition – and some of them really are unavoidable. If you need to use a wheelchair and the location is not wheelchair accessible, no amount of wanting to participate will make that totally feasible.
If you have extreme sensitivities, anxieties or phobias and the event centers around those triggers, it’s likely not something you’d be able to enjoy even if you could physically attend. For example, if you are managing severe anxiety about crowds, you’re unlikely to be comfortable at a very crowded event. If you are light or sound sensitive, a dance party or fireworks display are less likely to be enjoyable for you.
If you have severe allergies that the event doesn’t label warnings for, then eating anything at the event is likely not safe, which may lead to the event losing its appeal.
I have learned that feeling bored or anxious tends to set my symptoms off and that I have certain emotional triggers. I go to events where I am sure I will feel safe, and I minimize my time at overly formal events, especially ones where most participants don’t know me.
I learned this the hard way, as attending a wedding led to accusations that I was performing a sex act with my partner at the time during the wedding ceremony -I was having full body shaking episodes and leaning against him for comfort.
I have also reached the conclusion that caring too much about what other people misinterpret my symptoms as is simply not my problem, so if there is an event I really wish to attend and I think I will be able to enjoy it, I just don’t worry too much about what other people might think if I get symptomatic – though I also usually make sure that I have a friend or partner attending with me who can provide emotional backup if needed.
Consideration 4: Is my host able and willing to respect my needs?
In many cases, your comfort may be more about your host’s awareness and attitude than the physical logistics.
I attended a holiday party with family friends where the husband refused to recognize that I could not control my symptoms, and so when I had a particularly bad shaking episode, he actually reached out and grabbed my arms, holding me still, and kept repeatedly telling me that I needed to stop moving. I haven’t been able to look at him the same way since, and now rarely see those friends. I was utterly surprised by his response, but fortunately, that is pretty much the only time I have experienced that particular problem.
A more common challenge for people with invisible illnesses is to have their host or family decide that they are being picky rather than responding to a medical issue – this can lead to a refusal to accommodate real needs.
If you know that your relative or family friend is likely to do this, you need to be prepared for that. This preparation may be declining the invitation, or it may be gathering allies to help you have your needs met at the event.
The other relatively common occurrence is for people to assume that a disability means that you are completely incapable and fragile. This can include assuming that a physical condition means mental incapacity, that a mental health condition equates with insanity, intentionally poor behavior, or mental incompetence, or being treated as a complete invalid.
I feel fortunate to only have dealt with this with complete strangers, rather than at events, but Al’s parents went through a mild form of this after Al broke his hip. In their case, it was little things like his father escorting him down the stairs and his mother worrying about him falling whenever he was up and about. Managing a disabling condition is a learning process, and it just took his mother some extra time to find the right balance.
Try to be understanding if this is a new experience for them, and give them the benefit of the doubt. If things get too egregious, though, you can try to educate them – if the behavior is very persistent or abusive, you may need to rethink the relationship.
In any case, you likely are responsible for forewarning the host if you are planning to attend, and the further ahead of time you can have the conversation, the more options both you and your host have about just how to accommodate you.
In the allergy example, if you have a host willing to make sure that some of the provided foods are safe for you and can either label them or let you know what’s safe and what isn’t, then it’s often worth attending even with limited food options.
On this other hand, if you mention your allergy and your host’s response is unhelpful(anything from ‘then don’t eat’, or ‘that’s too much trouble’), you likely wouldn’t be able to enjoy the event.
Use common sense with requests like this – if you have severe allergies to very diverse foods, the best solution may be for you to bring your own food, or supplement the available meal with one or more dishes of your own that you know are safe – in which case the host’s accommodation is being polite and respectful about your needs.
With anxieties, sensitivities, or phobias, there is a degree of work that you need to do with a therapist or other trained professional to help you manage them. However, where you are in the moment is also an important consideration.
For people who are extremely sensitive to scents, noises, or other stimulation, a helpful host may have a space you could retreat to if you get overwhelmed.
With events in a person’s house, this could mean that you have permission to sit in a relatively dark, quiet space to recuperate, or that a particular bed or bedroom are open for you to rest in if needed.
In a public venue, that may be a designated room or space that is kept quiet, dark or otherwise respectful of sensitivities. My family’s holiday celebrations are usually at my mother’s house, and we all know that my sister may go upstairs when she reaches her personal fatigue point(she has experienced a TBI and an ABI as well as additional health issues).
It can also be as simple as being understanding if you arrive late or leave early. While Al was managing his brain injury, for example, we knew that he wouldn’t be able to stay at his sister’s house for the six or so hours that we would often spend there for a family barbeque.
So we’d often come a bit after the usual start time so we’d arrive closer to when the meal started than when the cooking did, or we’d leave earlier than we usually might because Al was getting tired. Nobody made a big deal about it, because they knew he was in the process of healing.
Consideration 5: What expectations do I need to adjust to get the most out of my holiday?
This may be your own expectations, or this may be expectations that your family and friends have for you. If you usually host a big holiday spread for friends and family, you may not be able to do as much as you normally would.
If you still want to host it, you may need to ask more from other participants, like help in preparation, planning assistance, or simply have the celebration be simpler or smaller. The important thing is that you don’t allow the adjustments to ruin the event for you and that you recognize that this isn’t a failure on your part, simply an adjustment that had to be made.
If you are going to be a guest for an event, you need to prepare yourself for the possibility of people not thinking about your needs. If your condition is new, your loved ones may simply not understand what you may need assistance with – which makes it your responsibility to make sure that the information is communicated.
There also are people out there who simply refuse to understand how disabilities work or what the larger effects may be. Each case is different, but it’s better for you to be emotionally prepared ahead of time.
If you know that a particular relative or friend isn’t very understanding of your needs(or is perpetually unaware), be prepared for that event to be more challenging. You need to decide if it is worth attending – and if it is, what your lines in the sand might be.
You may want to have an exit strategy if things become too stressful, and you may want to discuss your concerns with an ally ahead of time so that you can find the better ways to manage the situation.
Don’t expect yourself to do everything you used to do. You likely can’t, and thinking you can is setting yourself up for failure and disappointment.
You do need to be a bit more discerning about what invitations you accept and think about how much recovery time you might need between events. This might mean spending less time at events, accepting fewer invitations, or having lower expectations of yourself during the event.
However you choose to handle it, communicate as much of it as possible to your loved ones, so they understand what is going to be different and why. It should help reduce the disappointment of others and help you be less likely to feel bad or guilty about a lapse.
Conclusion: Should I go?
The holiday season tends to be a time of traditions, which makes change a bit more challenging to accept. It is easy to feel guilty about not fully carrying through on traditions, and if you tend to be the driving force behind certain celebrations, it can be very painful to recognize that you can’t do things quite the way you always used to.
If you have tended to be the guest for holiday events, you now have additional needs and considerations, and making those requests may be challenging or painful – both in admitting that this is now a limitation you have and in requesting that others make the accommodation. This is especially true if the host of your event is relatively inflexible.
Because you are now managing a large change in how you interact with the world, this may be an appropriate time to cut out events that you historically haven’t enjoyed but felt obligated to attend so that you have the energy to participate in the events that are especially meaningful to you. This is also a good opportunity to re-evaluate your holiday traditions and make sure you are able to enjoy the ones you find most significant or important.
The question of if you can participate is an important one, and you may need to be prepared to arrive late, leave early, or skip out on an event altogether based on the location or host’s willingness to accommodate your needs.
You will need to pick your battles, especially if your family or friends are unwilling to recognize your current situation or needed accommodations. There may be events that you are better off just skipping, but it is also possible that your family will surprise you by taking those extra steps. If they don’t know or understand what you need, they are much less likely to be able to help you – so the clearer you can be on your needs, the better your chances of having them met.
Your mindset and expectations are a huge part of how you will experience the holidays. If you go in expecting everybody to do everything possible to accommodate you, you are likely to be disappointed. If you approach the holiday with the assumption that you can do everything you used to do, you are likely to be disappointed. However, if you plan ahead, recognize the possible challenges and mitigate them early, you are likely to be able to truly enjoy the holidays. Focus on what you do have, what is working, and on enjoying the opportunities you get, and you are likely to have a happy holiday!