Into the COVID Holidays We Go

For as long as I can remember my mom, my aunt, my grandma and I have gone to craft shows together during November and December and done a huge amount of Christmas shopping. I love this tradition because of the time spent with my mom and the other women of the family but also because we support so many small business owners, we find fantastic, handmade gifts that our loved ones won’t be expecting and we support individuals who put such time and creativity and passion into every piece they are selling. 

We’ve entered what is obviously going to be a very unique, unprecedented holiday season. I think there is some nervous energy and anticipation because of all of the unknowns, but the holiday spirit will nonetheless take over as holiday music and movies flood our car radios and TV guides and suddenly pillsbury cookies with turkeys and christmas trees are next to the pumpkin pies in the featured aisles in the grocery store.

Since we’ve entered flu season the risk for COVID19 has obviously increased as well and we are all faced with questions like how do we celebrate the holidays this year? Is it safe for our extended family to gather? Or even to travel and get here in the first place? Are the school aged kids safe to be around the grandparents? How do you social distance or keep masks on when you’re gathering for Thanksgiving supper or Christmas morning gifts? 

What about black friday? Christmas shopping? Christmas church services? Baking day? All of your traditions that involve people, food, hugs and kisses…

Sadly, COVID19 will be playing part in our holiday happenings this year, but that doesn’t mean we won’t have opportunities to make it a beautiful, meaningful holiday season. It will be one of a kind, new territory for all – we know at least that much! 

Here’s the thing… for some of us, these aren’t new holiday complications. The COVID life isn’t so different from that of a chronic illness warrior who is sick to the extent of being homebound or even bedbound. We have always had to wear masks during flu season and avoid anyone who has been sick, even if that means skipping family gatherings or school/work. It can become an isolating time, you don’t get many visitors, it’s often just you and your caretakers, your family members, and your outings get as exciting as taking a drive on the back roads with your camera, capturing the sunset or if you’re really lucky, the bald eagle. 

So you can see how this time in quarantine has just amplified that spoonie lifestyle, and heightened the isolation, as even going to the doctors office is risky,   going to 7-11 to get a drink on the way home, running to the dollar store to get items for packages, heck, even mailing the packages is on the no list for me now. (Wear your masks, please. )

Thanksgiving can be a tough holiday to feel really involved in, really comfortable going to as a gastroparesis warrior/tubie. It is all food, the air filled with the smells of meat and pie, and there are so many loud kitchen sounds and multiple conversations going at once, lots of beautiful laughter, and oh so many forks tapping on the fine china around the table. When you are sitting at the table but are not partaking in the meal it’s hard not to become hypersensitive to all of the little noises and to be overwhelmed keep up with the conversation when you really just want to burst. Or eat. Or go in another room and just be. 

It can be difficult to adjust to being in a setting like that. For me it’s not about people eating in front of me, it’s more that it’s a holiday tradition that is suddenly stolen from you, it’s a bit different than a normal family meal or hanging out with your friends while they have a snack or whatever. This is something the whole family is doing, it’s more than a meal, it’s a celebration and a tradition, memories made, memories being talked about, but when you feel so sick and you can’t sit there any longer without getting sick, you learn to seperate yourself. 

Thanksgiving is a time to spread awareness, to encourage others to be thankful for something that everyone does all the time, so many times a day in so many settings without a thought, that has been taken from so many of us – the ability to enjoy food. The ability to be independent, to work and go to school, to live on our own…on thanksgiving, though, mostly focus on the eating :). I always encourage my readers to mention this to their family and friends on thanksgiving or any other time it pops into their minds, even just having froyo with friends or at lunch at school, whenever and wherever, take advantage of it and remind people that even the most natural parts of life can be taken out of nowhere. 

COVID19 is (hopefully) something we won’t have to alter our lives for forever. They are working hard to find a vaccine, to find an answer to get us back to real life and out of global crisis. Thank god. But for those of us with chronic conditions, we will continue having to alter holiday traditions, continue feeling out of place at times, continue wearing masks during flu season; our lives were complicated in these ways before COVID and they will be this way post COVID, but this year you have gotten a taste of our situation, and that’s something. 

Honor our struggle by not taking these limitations for granted when your COVID experience comes to a close.

Not Just a Patient

I am a person.

I may be sick, I may be a professional patient, but I’m also a person, but sometimes I feel like less than that when doctors, nurses, or insurance agents treat with disrespect, have biases against me before even seeing me or getting to know me, or neglect my physical or mental health because I am a challenging, serious case on the inside and a young, blonde, smiling 22 year old on the outside; invisible illnesses, especially in young women, often lead to many instances of mistreatment from medical professionals.

I’m almost never late to appointments. I have never missed, skipped, or forgotten an appointment. I email doctors with updates, questions, and reminders so that I can keep things going as efficiently as possible. I fill my meds, do my feeds, and try pretty much every alternative therapy suggested. I treat doctors with respect, no matter what. Not to sound stuck up, but I truly can’t think of much I could do to become a better patient, but honestly, that’s not my job in all of this. I am the patient, and I pay for these doctors to help me.

The idea of “doctors working for me,” is something I had never thought of before about a year ago when someone said it to me after I had a doctor say some hurtful things to me; I don’t work for the doctors, they work for me. They have no right to treat me with any less respect than they expect me to have for them or than they would have for another doctor, a friend, or a family member.

In fact, they should be treating me with great respect even if I’m not being extra outgoing or outwardly friendly. I don’t get paid to be sick. I don’t want to go to the doctor all the time. I’m often traveling hours to see them for just 10-15 minutes and they’re often not even able to help me or offer me anything new, so if I’m upset or not talkative, it’s just out of disappointment and frustration with my situation.

But doctors have chosen to be there, to help people. They choose their specialty, choose where they work, what age they work with, and they get paid very well for what they do. But just because they get paid and because they went through medical school doesn’t mean they are better people or even that they know what’s right.

Having invisible illnesses is hard. Many of these conditions are rare and under researched, doctors in small towns and even doctors who work in highly respected hospitals but aren’t specialized just don’t know these conditions. I’ve been to endless doctors who can’t pronounce the names of my conditions, don’t know what they are or what the symptoms are, or think they know and insist they know but are downright incorrect.

Sadly, a lot of girls with conditions like mine deal with doctors being rude or curt, abrasive, neglectful, biased and judgmental, and even abusive. Whether doctors are just having a bad day or whether they think they can speak to us in hurtful ways just because we are young or pretty, appear healthy, or smile and laugh like “normal” people and aren’t bald or in wheelchairs 100% of the time, I don’t know, but I do know that their actions and words can affect us for a long time.

When we are treated so poorly by people we have put our trust into, it isn’t just upsetting for a moment, it often affects our ability to put our trust into doctors and the medical system in general. Sadly, the only way someone like me can live at all comfortably is by seeing a multitude of doctors and working very hard to find treatments and medications that help minimize symptoms. We’ve put our lives in the hands of these people, we literally cannot go on without them. There is no excuse for them to treat us poorly, but when they do, we lose trust for them and we lose what faith we had in the system.

Doctors can go home and take off their white coats and eat dinner with their families, never having to think again about how that day went or what a patient said or did, but we go home and have to deal with the consequences of appointments for days, weeks, months. We rely on doctors and nurses and insurance agencies not just to be alive, but to have any comfort on a day-to-day basis. It’s not an option whether or not to have doctors or treatments, so if we lose one doctor, we have to work hard to find another one who is as good or better and willing to take on a tough case.

Conditions like mine mean you sometimes have to be both patient and medical expert, which is frustrating and exhausting. I don’t ask my doctors for magical treatments or cures that aren’t out there yet, but I do ask them to treat me with respect and dignity. I’m a person, not just a patient.