5 Questions I Ask Myself at Thanksgiving with Rare Disease

Thanksgiving is a time of gratitude, family and maybe a little gluttony. It was always my favorite time of the year in high school and college. Now, while I still really look forward to seeing family, things have changed since my Lyme, POTS and Celiac diagnoses. While not all of these are rare diseases, the average person probably doesn’t know what these conditions mean for the person dealing with them.

I have mixed emotions about the holiday because traveling tends to mess with my health. My sleep is off, I get exhausted, my strict diet is greatly challenged, and I’m being more social and coming into contact with colds and flues that are likely to set me into a full-on flare. Additionally, while my diet and needs are no longer an inconvenience to me because I’ve adapted to everything, I know that for people who don’t often see me, these things can seem really strange.

While prepping to stay at a family member’s house, I find myself saying things like “I can’t really digest in the mornings so I require a liquid breakfast...” and then over explaining myself to make up for the fact that I am bringing my own food and can’t partake in the traditional brunch. I am almost apologizing for my body’s physical reaction to certain triggers because everyone else is okay with them except me.

In the end though, they’re family and friends, and I’m still excited to see them. I am so grateful that I have the love and support that I do, because I know that isn’t always the case with rare disease patients, especially those with controversial diagnoses. I am so fortunate to have the love and support I do, but I still can’t help but ask myself about the uncertainties that my illnesses cause.

Below are five questions I ask myself when it comes to the holidays and managing my rare disease.

  1. Am I going to get sick or flare from being in airports and airplanes because of all the germs mixing with my crap immune system?
    A joke from the movie Airplane!
    Source: giphy
  2. How am I going to not look super high maintenance when I explain to everyone what I can and can’t eat?
    vegan joke
    Source: giphy
  3. What if I have a flare from the disruption in routine, less sleep, and change in diet and exercise?
    Leslie Knope being dramatic about having the flu
    Source: giphy
  4. Am I going to just be a massive inconvenience to everyone?
    Ryan Reynolds annoyed
    Source: giphy
  5. Is it okay for me be to excited even though it’s possible I might collapse after?
    Grandma saying yes
    Source: giphy

     

Okay the last one obvious. OF COURSE it’s okay to be excited! While I have all of these doubts, the one thing I am sure of that’s it’s wonderful to be around a loving and supportive group of people. So while I might get sick and my weird food habits might be a annoying, I am still so grateful to have the family I do, and to be well enough to celebrate with them this year!


Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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