8 Things I Want My Loved Ones to Understand About My Life With Illness This Holiday Season

There is much that can be said about chronic illness and the holidays. Much of it is being said by many other writers, and I appreciate many of their articles. But, while those things are very helpful, they don’t fully encompass my situation. So, I made a list of my own. Here are some things I want people to know about my life, how I navigate this time of year and how they might be able to assist me in making that navigation easier, not more difficult.

1. I’m always “on.”

There is this word — hypervigilance. And that word is my life. It basically means my fight, flight or freeze instinct is always affecting me. We all have this instinct. For most, it comes when your adrenaline spikes — because something is frightening or startling. For me, it is present 24/7. And you might think that is an exaggeration, because I must sleep. But you would be wrong, because even in the middle of the night my brain is in fight, flight or freeze mode. I take medication to make the nightmares less affecting and to get some rest, but that doesn’t mean hormones aren’t flooding my stressed-out system every moment. They are.

Due to PTSD, my brain is incapable of distinguishing threats from safety. I see every movement out of the corner of my eye. I hear every sound. I feel every presence of a body too close to let my guard down. I am constantly in this heightened state of being. My brain and body are hypervigilant – looking constantly for threats and never feeling safe.

Around the holidays, this instinct can be even more affecting. This year I will travel to visit my sister in Washington. I’m thrilled to do so! But I am already under increased stress as my brain plays out the scenarios that will add insult to its injury (or to its malformation, more accurately). I will need to be around people who don’t make me feel comfortable. I will need to be in the airport, filled with people I do not know. I will need to sit next to a stranger for hours on a plane. I will need to stay in the home of other people, and will be unable to retreat to my “safe space” in my home if I am overwhelmed. I will need to face some of the people who have been instrumental in causing my mental illness and cope with being in close proximity with people who have caused me great harm.

For a full week, I will need to pretend I am not freaking the f*** out in every moment, while I am doing exactly that. I need to be present and aware, but not be affected by what is going on around me. And that makes no sense, but it is true. I work for several weeks before I leave for the holidays on being mindful, staying calm and not letting false beliefs or the actions of others make me feel fear, depression, shame or any of the other negative feelings I know might rise during the week. And every year, to date, I have failed to be mindful, stay calm and not feel fear or depression or shame. Every. Single. Year.

So, when you are laughing and joking and enjoying moments, remember that the holiday season adds overwhelming amounts of hypervigilant stress to my moments. Know if I disappear, cry, snap at someone or simply don’t engage in what is going on around me, it is because I am overwhelmed, I don’t feel safe and I want to be hiding in a closet with a blanket over my head (since I don’t have the safety of my home to which I can retreat). Do your best to make me feel welcome and safe and comfortable. And don’t be angry if those attempts don’t stop my hypervigilance from affecting me in negative ways.

2. I’m always tired.

I know I say this a lot. I’m tired. I’m exhausted. You hear it all the time. But I keep needing to repeat it, because it keeps being a limitation others can’t seem to tolerate well.

I experience debilitating fatigue from my fibromyalgia. It never goes away. Rest, sleep, naps — none of them take that fatigue away. And it isn’t just an overarching fatigue that affects me; there are these smaller categories of tiredness that come into play. My muscles can be so fatigued that walking even a short distance is nearly impossible. My brain can be so fatigued that adding up single digits or finding the name for an everyday object is nearly impossible.

Trust me, I want to go to that museum or hike that trail or join in that board game. My brain and my body cannot do so. They are too tired. They are exhausted to the point where they completely shut down and I navigate the day in a sort of stupor. I might be physically present, but my mind is completely absent from the moment. Because it is too tired to process one more thing. Because I am too exhausted to put energy into the moment. And taking a nap or resting for a bit is an option that might help a bit, but it doesn’t necessarily remove the fatigue I feel. I may wake as exhausted as I fall asleep.

So, when you are planning and making an itinerary for the fun and fabulous things we will do during the holidays, remember that I might not be able to give my energy and attention to those fun and fabulous things. And they might turn into a holiday that is not fun or fabulous for me. Those exciting events might harm me physically and mentally.

3. I’m always in pain.

This item ties to the one above. Not only is exhaustion an issue, but pain is always present for me. Physical pain, in various forms, is always an issue. It never goes away. The most common pain is a dull ache that exists all over my person. But, there are forms that are much worse. I often call the most affecting of them “voodoo pain.” It feels like someone just stabbed a long needle into my body. And because I am always feeling this pain, and because I get less rest and am more hypervigilant during the holidays, I can get to the point where pain becomes the leading entity, and I do and say things that are not nice.

I get cranky after pretending for a whole day that I am “fine.” I get tired of the façade and I become overwhelmed by the sensations that do not stop.  I can’t cover up that pain and frustration anymore. And when you see that pain — when it comes out of my mouth in snarky comments, or makes me offer frustrated sighs — it isn’t pretty, and you don’t like it.

So remember that I don’t necessarily want to be cranky and terrible, but a long day of masking my pain usually results in the veil being pulled back and my pain showing in unattractive ways. And make sure you aren’t ignorant of the fact that I am still hurting, no matter if I am participating in active events or sitting quietly in the corner. There isn’t a point when pain starts, or a way to ensure pain doesn’t play a role. I’m always in pain.  That won’t change. You need to be aware of that pain, even when I am trying to hide it, because if you allow me to pretend long enough, pain will rule over reason or emotion. Make certain I am able to express my pain without feeling judged or shamed, and make certain I am allowed to disappear when the pain is overwhelming, so I don’t spit out words I might regret later.

4. Half the time, I hate you.

I know that sounds terrible. I know it is offensive. It is also true, and not just for me, but for you. We are family. And family is good and important and lovely. But family is also complex and challenging. Here’s what I mean by that: for me, it is impossible to get together and not act like children when my siblings and I are around each other. Shortly after the initial hugs and “how are you” conversations, families start to slip into behaving in the ways they behaved when they were all living together in the same space. It happens to many people. It is a sort of regression that sucks us in, whether we want to behave that way or not.

Think back to when I was 9. Was I interacting with you in mature and thoughtful ways? Nope. And, when that instinct to behave in ways we formerly behaved in kicks in, I don’t always interact with you in mature and thoughtful ways. The unresolved issues from our lives together become important somehow — even though it doesn’t matter who ate the pepperoni in the night that time or who instigated the search for the Christmas gifts that year when we all saw what Mom and Dad bought for us before they had a chance to wrap the gifts. Everything that was left unresolved in our childhood is reintroduced in our minds, and instead of talking through the unresolved issues and dealing with our feelings, we just act like children and interact like we did when I was 9.

It isn’t your “fault” that this way of interacting comes up, and it isn’t my fault either — it is just life. We all fall back into patterns that were already there more easily than we create new patterns. And I still love you, even in those moments we don’t interact in the best and most healthy ways. All that anger and frustration and disillusionment is my childhood self trying to fight back at things I didn’t deal with in childhood. It isn’t the way I want to interact with you, but the way that feels the most familiar.

5. Half the time, I beg for approval.

There is a weird element of my disability and of my dealing with childhood trauma that makes me constantly seek approval. I did it as a child, I did it as a wife, I do it as an employee and I do it in my constant perfectionism. You learn to appease the other, no matter what, when you are in situations where you don’t have autonomy. It makes no sense. But it is what happens. Stockholm syndrome is a real thing. Adopting the reasoning of the abuser in situations of captivity or doing whatever you can to survive out of desperation are real ways of coping with trauma. And because of this, I spend an inordinate amount of time wanting other people to like me.

When I am spending time with you, I want your approval. I rarely get your approval, but I think that is because I am a single adult person with progressive views, which makes me an excellent scapegoat. It happens in lots of families. It is not abnormal for a scapegoat to exist, because there are always unresolved struggles of some sort, as I mentioned earlier. Someone carries the blame for the stressors that affect the family members. And that person, for our family, is me.

So, as both the “black sheep” and the trauma-affected individual, I struggle through the holidays wanting your approval and instead receiving the blame for family challenges. It puts me in a difficult space. It is often extreme in its harm. It breaks down my psyche and causes me to hate myself and to feel without value. It makes me feel attacked, ganged up on and anathema.

I’m not sure what tips or insights to give for this point. It is complex. It is deeply rooted. It is difficult to explain, much less overcome. And while I want to say, “Don’t blame me,” or “Assure me I am good enough,” I’m not certain such statements would matter. So much of this is unconscious, entrenched behavior, and it isn’t easy to change.

I think the best statement I can offer is, “Be present in the moment.” Think through the reasons behind the “just kidding” insults, the rolls of the eyes and the comments you wouldn’t make about your friends but don’t hesitate to make about your siblings. Be conscious of the ways that falling into these behaviors is damaging the whole family, and especially me, because I am the one seeking approval due to the trauma of the past. Give me permission to be myself, without judgment. And, hopefully, with repeated, conscious attempts to avoid the pitfalls of my PTSD, we can have a more sensible way of relating to one another.

6. Things become a big deal.

Many of the things that are simple for others are more difficult for me, as I experience chronic pain and mental illness. Laundry, showering, getting dressed, climbing stairs, getting out of my routine and more cause much distress. And, if these simple, everyday tasks can be distressing for my body and mind, imagine the impact of preparing to travel across the country! I need to have things clean and organized. I need to leave detailed instruction for the friend caring for the apartment and the pets while I am away. I need to pack the right amount of the right things. I need to ensure I have access to all of my medications while I am out of state. I need to mentally prepare for all of the above points and their impact on my mind and my body and my spirit. I need to figure out how to put both clothes and coping mechanisms in my carry-on luggage. I need to shop. I need to figure out where and how I will manage my disease and my rehab from recent surgery in another state.

If showering is a big deal for me, can you imagine what a big deal it is to accomplish all of the above tasks? I can imagine… and that image is terrifying.

Walking any distance is a big deal. Having to share a room with someone else is a big deal. Going out to dinner is a big deal. Going to church services or concerts or events is a big deal. Everything that seems normal to you is a big deal to me.

And there isn’t a way for me to make it less of a big deal. So, you will need to accommodate me in a myriad of ways. You need to think through plans and events and expectations for the week, and you need to try and empathize with my body and my brain living through those plans, events and expectations. Can I do it? Can I physically accomplish the task, and can I mentally cope with the experience? And if you cannot empathize in this way, you need to ask me, simply and directly and without judgment.

If you cannot imagine my limitations, you need to ask me what they are and respect the response. I will set boundaries, but I will also sometimes push myself beyond what I should or can handle, because of the aforementioned desire for your approval. Don’t let me feel like I need to push harder or do more or participate with more vigor. Don’t question my boundaries. Respect that I know my limitations, let me share those limitations with you and develop plans that accommodate my illness. I want to participate, but doing so is a big deal. Make it as easy for me to be a part of things as you are able.

7. Your unsolicited advice is unwelcome.

I know it seems a bit rude to offer you all of this advice but then tell you not to offer me any. But this list seeks to make you aware of things that are facts about how the holidays are affecting for me. And the unsolicited advice I receive is usually unhelpful and sometimes very hurtful. At some point, I set a boundary about this type of advice. I stopped tolerating it. I started ignoring it. I rejected it.

Usually, the advice people have for me comes in one of three forms: financial advice, employment advice and/or “medical” advice.

Here’s the thing:  I am disabled and unemployed and impoverished. These are facts about my current situation.  And I know you are trying to be helpful by telling me about a job opening, or by telling me how I could lessen my expenses by moving in with my dad, or by informing me that your friend Susan runs marathons to manage her fibromyalgia, or that my disease is probably misdiagnosed and I likely have black mold in my ceiling, or that green juice and apple cider vinegar can cure everything wrong with me, or that letting go of the past will end my post-traumatic stress.

No. Just no.

I’m not looking for work outside my home. I’m also not looking to sell
anything that involves multi-level marketing. I’m not able to move away during an active court case in my state. I’m not willing to sacrifice my independent living, my team of medical specialists, or my hand-crafted Wonder Woman desk because you don’t want to contribute to my medical expense fundraiser on youcaring.com. I am not able or willing to run marathons, and they certainly would not manage my illness. I don’t have black mold in my ceiling, but even if I did, it wouldn’t mean my expert rheumatologist is wrong about my diagnosis, and you (who have never studied science or medicine) have the answer that cures my disease. I love green juice, and I make my own organic apple cider vinegar, but neither of them is curing my disease. They may be helping me increase my wellness, but they are not ridding my body of a central nervous system disorder or reshaping my amygdala. That won’t happen. It isn’t possible.

Unsolicited advice is infuriating, not just because I have heard it all before, but because it assumes I am not knowledgeable enough about my own life and person. It almost always comes out as a judgmental expression of how I am doing life “wrong.” I’m not doing life wrong. I’m doing all sorts of good and amazing and appropriate and helpful things.  I’m fighting for my rights and for my wellness and for my life. I’m working toward important goals and making necessary changes to offer the best possible situation for my body, mind and spirit. And if you don’t trust I am doing that, then you have an issue, not me. If you cannot allow another to diverge from the path you imagine they should take, then you have serious control issues to work through. This is my life, and I know what is best for it. And that doesn’t mean I don’t consider the advice of those whom I trust and care about. I texted a trusted friend a couple of questions while writing this article, because I valued his opinion on the subjects within.

But I don’t need people who are tangential in my life to come at me with pseudo-science or self-help that is decidedly unhelpful. What can you do if you are one of those tangential people whom I rarely see or interact with and you have advice that you believe I should hear? You can spend your energy on becoming a trusted friend or you can not contribute your advice. Please don’t tell me how to “fix” my life or “cure” what ails me. Listen to me. Hear my story and know my heart. Trust I know that story and that heart better than anyone else – even and especially you – and let me live my own life, without your interruptions.

8. I love you dearly.

I know that much I have said here is harsh, and some of it comes off as selfish upon first glance. It isn’t selfish. It is the reality I live within. I do need special treatment because I have special needs. The particular chronic conditions I have make it impossible to live a life others deem “normal”. And you can believe that and accommodate that, or you can deny and not accommodate that. Either way, I love my family and my friends.

I’ll do all I can to spend time with you, even if that means more pain, discomfort, trauma and struggle for me. I will make those sacrifices because I love you, and you are worth sacrificing my comfort and my peace for — but only to a point. Because I need to care for myself before I can care for others. We all do. And that is why we often clash in relationships – because we forget to care for ourselves first, we seek approval in ridiculous ways and we try to sound knowledgeable or offer our own perspective to overlay the life of another instead of allowing the perspectives of others to be different from our own. We strive to overtake and overcome in our interactions, rather than to listen and observe and support.

Even people who are not chronically ill, or who have never experienced trauma, deserve the respect of having their own perspective. And fighting over whose perspective is “right” or “wrong” isn’t worth the price of losing those who love us or those whom we love.

You may not understand my perspective fully and completely. That doesn’t mean I don’t love you. I do. And in order to love me well, please do so without conditions. You need to be able to love me, even when I see things differently, even when I ask for special treatment, even when I am cranky from pain and even when I am refusing to go to an event in order to rest. My sick, poor, unemployed self needs to be loved, not judged. And if I am working so hard to get to where you are and to celebrate the holidays with you, know I don’t judge you, but love you without conditions. I’ll do my best to listen to you and trust your perspective and let you live your life without tethers I have tied. I hope you will offer me the same.

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Chronic illness and mental illness can be difficult to cope with at all times, but the holidays are a special kind of struggle. Expending physical, mental and social energies can take a lot out of me, and there are so many ways I can be hurt by well-intended interactions. For me, the things I have touched on here are helpful. For another, they might not be things that matter. But the constant is that special needs require special understanding, and in order to understand, you need to hear what harms and what helps those coping with chronic conditions this holiday season.  Love without conditions, and attend to or accommodate needs or limitations. If you are able to do that, we will all have holidays that are a bit happier!

Happy Holidays!

And now I am going to go begin the process of fitting things into my suitcase, weeks in advance of travel, so I recover from the strain of packing long before I meet the strain of the airport and the plane.

You can follow my journey on Learning to Be Whole and hear how the holidays turned out for me and my family. (Fingers crossed that this is the year of mature interactions!)

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