Not just surviving the holidays: Part 1
For a lot of people, the holidays are a really exciting time. There are cookies and chocolate, hot cocoa, Santa, presents, shopping and family time. Those exact same things can be the most triggering for people with chronic illnesses. Sometimes the holidays is what people stress about the most. It ends up being about surviving the holidays, not enjoying them.
Having a chronic illness, you don't really get to have a “holiday”; you don't get time out from being sick; you can't call up your body and ask for a vacation just during Christmas or Hanukkah (or another holiday you celebrate). Your family might be able to ask for a couple of days off work; not from your chronic illness though - you still have to navigate that during holidays.
Recently we, Michelle (Occupational Therapist, Australia) & Brittany (Licensed Mental Health Counselor Associate - USA), asked people with hypermobility conditions what's the toughest thing you have to endure emotionally, mentally, spiritually during the holidays?
And that got us thinking: How do you get through this? And even more so, how can you feel like you can healthily, safely and hopefully enjoyably get through the holidays and not just say "I dealt with it, I got through it”?
We have a couple of things that we would like to encourage you to try or to help you come up with some ideas to manage what can be a very stressful time.
Communication
One of the biggest things that tends to be stressful is communication. A lot of time during the holidays family from out of town come, and you're having lunch or dinner; chances are they haven’t seen you in a while. They haven’t seen you become more healthy, or they haven’t seen you where you at right now, which may be a slight decline, and they may not know how to address it. And that’s OK.
Something that has helped me (Brittany), and others I’ve talked to, either with a trusted friend or family member, write something down for you to have as a prompt. Brain fog is such a huge problem, it’s something I struggle with every day. I forget mid-sentence, I forget where I’m going, what I’m doing, why I’m doing things. So I have a lot of lists and reminders, and I’ve learned that notes are my best friend.
Pre-Christmas, I’ll sit down and take notes: this is how I’ve been doing the last few months, and this is why… and just giving a quick Wikipedia answer of "hey you know what, my health hasn’t been great, but I’m doing what I can to manage", and always try to add "I’m really happy to see you too, how are you?" That way it’s not only about me and my illness. I don’t want to talk about my illness, because I’m more than that, and so are all of you. But having that note helps because if I forget I can look and remember, "oh yeh I had an MRI done," or “I had a new line placed". Or "in the new year, I’m starting hydrotherapy". And, that helps the communication with the people around you.
To avoid talking about you, try to talk about fun things, like a movie you just saw or something you received recently, like a new book. It helps bridge the communication divide that can creep in when you haven’t seen someone in a while. Being able to hold a conversation, even just for a short period about something other than my health, helps me (Brittany) feel like I have part of my able-mind and able body back.
I (Michelle) like to prepare some questions for people I know I'm going to be with - I sit down and think about their life and types of questions I might be able to ask e.g. How's work going? How was that holiday? What's planned for 2019?
You can read more about that in 5 Tips for Managing Christmas Day Anxiety
Isolation
Something that’s also hard during the holidays is isolation, on multiple fronts. People either isolate you, and you find yourself sitting by yourself; or you separate yourself from everyone else, either hiding in your room, hiding in a "safe place", or just not going places.
We understand that sometimes health does take a priority and we may not be able to get places we want to go, but I’m not addressing that in this situation right now.
With isolation comes time for self-doubt, for more anger, sadness, loneliness, time with fewer friends and family, and that whole communication divide can widen. It can be a vicious cycle.
Maybe having a lot of people around you is really overwhelming? I know it is for me. So I will seek out one person, maybe two people and try to talk with them, that way I’m not by myself, but I’m not with 50 people (not that I know 50 people but you get the drift ). I (Brittany) also always have my dog with me, so that’s helpful - she always draws more attention than I do.
And if things do get overwhelming, I know that I can excuse myself to go calm down, take a few minutes to refocus. Brittany always puts on Jesus music, Michelle goes for meditation music. We both breathe and remind ourselves we are safe and get back out there and do what we can to be social & enjoy ourselves. That way there's no time for focusing on the “everyone left me” "everyone forgot about me", "no body cares about me” thoughts that creep in when we're on our own. And if they do creep in, a good reality check will tell us that really, people do care, but maybe we don’t give them a chance? Or it’s easier to go and hide than it is to try and just be with them.
Being with people can be hard if you have to maintain a conversation, and stay switched on, however, try and go prepared, bring out Uno or “Go Fish”. Even little things like playing games help to break isolation, which can do a lot of for our physical and mental health.
Stress
We all know that families can be both a blessing and a curse, especially during the holiday season. It seems that Uncle Jerry always knows the right concoction of vitamins, cousin Susie asks if you’ve used a specific type of essential oil, and grandma has asked if you’ve seen the 5 million doctors she’s seen this year. Sometimes that can be really helpful, and at other times that can be extremely, extremely difficult.
We are both grateful to each have some family who tries to understand (to a point). But also know people don’t have that, and if that’s you, our hearts reach out to you during the holidays. Having family members legitimately not believe in the conditions that you have can be detrimental for you, for your mental health, and it also relates to trauma (which will be touched on later).
Having family unwilling to learn or listen is difficult and connects in with the desire to isolate, and can become part of that vicious cycle. If you are healthy enough to be able to hang out with your family, and possibly not talk “medical”, then try that. Start with basics of non-medial, talk about sports, the weather and the other tips above. If they do ask, then start with basics “oh yeh, I had to go to a couple of doctors appointments, but it’s OK” “Oh the tests weren’t great, but weren’t going to try something else”, “Or I appreciate the thought but that isn’t something me and medical team think is right for me right now”.
In all that you do, please take yourself and your health into consideration. If your health is in danger, maybe you do need to take step back from those around you; find someone who is safe, call a spoonie friend, FaceTime someone, find someone who can help reground you, refocus; and remind you that you’re OK, it’s going to be OK, it’s one night, it’s one meal, several breaths, several minutes, only a couple of hours, and through that be able to survive the more of ignorant family members. And having someone who is on your side is always helpful too, even if it’s just an animal. My dog is my (Brittany's) lifeline for that. Michelle just wishes she could steal Brittany's dog Jasmine, and transport her from the USA to Australia.
Brittany & Jasmine in front of a LOVE sign at Christmastime
Trauma
Dealing with trauma during the holidays is hard, it can be triggered by something that has nothing to do with an original type of traumatic event. A loud noise, a movie, a specific song, or nothing. During the holiday season, there are a lot of people about; there are more noises, more visual stimulations and one may become more overwhelmed than during a typical season.
Being a) somebody who has trauma and b) somebody who works with people who have trauma, I (Brittany) recognise that working out a plan that makes you feel the safest is the most important, and planning ahead as well. For my health, I don’t go out alone, especially during the holiday seasons; I always have a safe person, and we have a plan in place. They know what it looks like for me when I start getting overwhelmed, and my dog knows how to find a door to get me outside of whatever store I’m in. If I start getting too anxious and I’m unable to recenter myself, my family or the person I’m with knows how to help reground me.
Maybe you need to have that kind of plan in place as well? Find someone you trust, who you’re willing to be honest with and say hey “I could really use some support right now, and this is how I can use it”.
It's important to remember that not all trauma stems from military or physical violence/physical altercation. Medical trauma is very real, and we don’t think people are as aware of that as they should be. I, Brittany, get triggered by various smells because it causes anaphylaxis. I get nervous going into different stores because it could trigger a seizure. Trauma can be triggered inside the home as well as outside. I have to prepare for these types of events and I legitimately send an email out to my family saying please no perfume, no heavy smells; if there is going to be music please don’t let it be loud; if we’re having movies, no flashing, etc. But it’s taken me a while to be that advocate for myself; it didn’t happen overnight.
If you don’t feel like you can do that by yourself yet, that’s OK, find that person that you feel comfortable with, ask them if they will be willing to help you and have them write it. Have them say “I’m helping X right now and they were hoping that XYZ”. Taking that step is a huge accomplishment, in so many ways. You are standing up for yourself and for your safety and also, it can give you that control back; control that you feel like you lose from a traumatic event. And losing that in the first place, I know is one of the scariest things. And so asking for no perfume, or no flashing lights, honestly gave me (Brittany) a huge sense of freedom in something as simple as Christmas dinner.
And so with that in mind, when dealing with ignorant family, fear of isolation, lack of communication and trauma, take each thing and hold it and know you’re not alone in this; people are fighting with you, and for you, and alongside of you. Have somebody there to help hold you up when you need it, walk alongside to experience it with you; you have people in front of you to help pave the path, and people behind to help follow in your footsteps. First and foremost is your own health, if you have to take a break, take a break. If you need a "me moment", take a "me moment". Try to enjoy yourself as much as you can this season.