No one wants to have an illness, but when you’ve been living with one without answers for 20 years, the long-awaited diagnosis deserves a celebration. I am celebrating that everything that I’ve been feeling - the physical, social, and emotional pain - finally has an explanation. EDS has been part of my life every second of every day for as long as I can remember, and now I finally can understand. I had a “party” to celebrate the fact that I finally have answers and that the various experiences that I have gone through now make more sense. I would never wish the pain of this disease onto anyone, but when you are given the difficult situation of being chronically ill, you really have to make a positive out of every negative situation, even if that means celebrating a diagnosis. If you don’t try and find the positives, it has the potential to ruin you mentally, which can then ruin you physically, which then creates a cycle of exacerbating effects. Although it is difficult to remain positive when you are in so much pain, I am trying my best to remain optimistic, hopeful, and strong.
The Power of Having a Diagnosis:
Actually having a label for what your body is experiencing might not seem like a big deal, but when you’ve been searching for answers for your entire life, a diagnosis really is life changing. I’m not sure if others who have not gone through it themselves will be able to understand how impactful it truly is, but I will try and explain my perspective to help.
It provides VALIDATION in so many forms. It validates that I have not been over-exaggerating about what I’ve been feeling physically. I’m not a baby, and rather I’m strong mentally and physically. I’m not a hypochondriac, I’m not crazy, it’s not all just in my head; there are physical explanations for my pain and symptoms. It validates that every doctor that said I was fine or disregarded my pain was wrong for doing so. It validates that anyone that didn’t believe me was proven incorrect. And most importantly, since a lack of medical answers can make you doubt yourself, it validates that I should have never questioned anything about who I am as a person. Now that I am able to understand what is happening in my body, I no longer have to feel ashamed about my experiences, pain, or symptoms. It validates that I shouldn’t have to fear that others won’t believe my pain, because if they don’t, that’s all on them and not me. If they can’t take the time to imagine and understand my experience, then that says a lot about their character, and nothing about mine. To me, having empathy towards others is such an important quality to have for so many reasons. And if someone isn’t willing to believe the symptoms that I experience from a disease that they probably know nothing about, then that is okay because it indicates that they probably aren’t someone that I would want to be close with anyways.
Spending Time with the People That Support Me:
I know only having a party of three might not scream party, but in this case, it’s all about quality of the people rather than quantity. When I first told the people that I’m close with about my diagnosis, not everyone was as supportive as I thought they would be. Actually, a majority of people’s responses were disappointing because they made it clear that they don’t understand anything about it. There were a couple of responses that were shocking and although those responses hurt very badly, it helped to show me who is really there to support me.
The two people that I celebrated with, my best friend Emilie and my mom, are the two people who’ve supported me even before I had answers. They have been the two that have stuck by my side through all of the ups and downs (I’ve been friends with Emilie for over 6 years and have had an extremely close relationship with my mom my entire life). They are the two people that have always put an effort into understanding my experience. They are the ones that when I first found out I had EDS, they wanted to know everything about it and what it meant. They are the two that I don’t know what I would do without them. Of course, others in my life have also been supportive, and I’m very appreciative of that, but my mom and Emilie’s support have been constant and unconditional over the span of years. This type of support makes me so lucky and I wish that everyone had this positive of relationships in their life.
Celebrating the Start of a New Chapter of Life:
Finally knowing what is causing all of my symptoms leads me to a new place in life that I have never been in before. We have always known that I had something, so getting a diagnosis puts an end to our search and finally gives us the lifetime anticipation of answers. For the first time in my life, I don’t have to live in constant wonder thinking about what is causing me to feel this way. I don’t have to constantly go to new doctors to explain my entire medical history just for another dead end. I don’t have to spend an endless amount of time searching the internet in hopes of solving the mystery myself. And finally, I don’t have to feel completely alone or feel like no one understands (because other people with EDS do!)
So now that the searching chapter of my life has ended, what’s next? Now it’s time to focus on managing my symptoms and making my experiences into something positive. I’ve already accepted this to be my life a long time ago, so now it’s time to embrace it. Now it’s all about making the best of my situation and hopefully be able to help others with theirs.
Want to Have Your Own Zebra Celebration?
Here's Where I Got My Zebra Party Products!
Custom Zebra Princess EDS Shirt - $29.97
https://www.customizedgirl.com/studio/8825
I couldn’t find an EDS shirt that fit what I was looking for, so I decided to design my own! I love being able to easily design my own products because I love having something that is unique and different from anything else that you could find online. I have ordered from this website before and am happy with how my shirt turned out. This shirt fit exactly how I expected; there’s a slight v-neck, 1/2 fitted sleeves, and super light and flowy fabric. This style of shirt does have slightly see-through fabric, so just know that you might have to wear a tank top underneath.
Custom I <3 Someone Who Is Rare EDS Shirt - $24.97
https://www.customizedgirl.com/studio/G2000LP
I custom ordered a shirt for Emilie so that we could have unique EDS shirts that still go well together! This style of shirt has a more typical t-shirt fit, the sizing was accurate, and the fabric is soft and stretchy. Unlike my EDS shirt, this style’s fabric is not see-through. The expected shipping for these two shirts was 12 days, but it did arrive a day or two early so that was a nice surprise!
Zebra Plush PJ Pants - $19
https://www.venus.com/productlanding.aspx?BRANCH=7~67~&ProductDisplayID=34666&clr=ZBRA&sc=XWEBSEM75&cm_mmc=PLA-_-Google-_-Z23995-L-ZBRA-_-BKT_L-UN&gclsrc=aw.ds&hc_source=google&hc_medium=cpc&hc_campaign=UN_Low&hc_term=Z23995-L-ZBRA&gclid=Cj0KCQjwtMvlBRDmARIsAEoQ8zQ-8DQ0-N2_da_hedhBDMt3ELf-FY2onGj7yB6lk4rOv0-7NBu4Ti0aAp1_EALw_wcB
Surprisingly, it was more difficult than I thought it would be to find fuzzy zebra PJ bottoms. This was the only website that I could find that had what I was looking for. These pants had a fit and flare style, similar to yoga pants, and were super comfy. I have never ordered from this website before but was surprised with how quick shipping was (less than a week).
Custom Zebra Paper Plates - 8 9-inch plates for $14.80
https://www.zazzle.com/pd/spp/pt-shindigz_paperplates?tdid=28314cc0-abb6-4428-a3b8-61b5ad4ec3e8
Similarly to searching for EDS shirts, I couldn’t find zebra plates that fit what I was looking for. I ordered these custom plates to match my shirt and was super happy with how they turned out. The estimated shipping time was 4-7 days, but I received these only after 3 days of ordering them! That is super quick for a custom order!
Zebra Print Napkins - 16 for $5.61
https://www.amazon.com/Zebra-Print-Beverage-Napkins-Accessory/dp/B00810NTN6/ref=redir_mobile_desktop?_encoding=UTF8&ref=ppx_pop_mob_b_pd_title&th=1
These are just some basic zebra print napkins that I ordered to match my plates. You can’t beat buying something from amazon prime!
Black & White Marble, Silver, and Silver Confetti Balloon Package - 60 balloons for $15.99
https://www.amazon.com/gp/aw/d/B07K2W6ZLP?psc=1&ref=ppx_pop_mob_b_pd_title
I ordered these marble balloons instead of typical zebra balloons because I thought the stripes looked more realistic and I wanted something a little different than typical zebra print. This was a large package of balloons, which I didn’t not use all of them, but I liked the combination of silver, confetti, and marble. All of the balloons that I used to decorate with were filled with helium at the same time, but by the end of the night, all of the confetti balloons were on the ground (you may notice that there are no confetti balloons in the pictures that we took other than the pictures of just the decorations). Although the confetti balloons did not last, it turned into a fun joke to see how long it took for all of them to come down. I do not recommend using the confetti balloons with helium because there is a good chance they won’t float after an hour or two, but they are still cute balloons to decorate with.
Jumbo Zebra Balloon - 32-inch balloon for $7.00
https://www.amazon.com/gp/aw/d/B0073WSED8/ref=yo_ii_img?ie=UTF8&psc=1
This was a must have for my zebra party! It is the perfect balloon to take pictures with and it is still floating two weeks later.
Zebra Favor Boxes - 12 for $8.59
https://www.amazon.com/Kate-Aspen-28382NA-Zebra-Favor/dp/B078J22M6K/ref=mp_s_a_1_4?keywords=zebra+box&qid=1555258084&s=gateway&sr=8-4
These are super cute. They are meant to be favor boxes, but they are tiny and not much would fit in them. They were perfect for decorating the table with though!
Zebra Fuzzy Blanket
I actually already had this blanket! I've had this blanket for at least 8 years, but I originally got it from Costco.
Some Go-To Party Products That I Already Had!
Silver sparkly tablecloth
Through decorating for different events, we now have silver, rose gold, and gold sparkly tablecloths. I love these and use them on a rotation for events (depending on which color matches with the theme best). If you like sparkles, then these are cute tablecloths to use and make an area look fancier and more put together. They are also really cute to use as a backdrop for pictures!
Candy containers
Once you have these, you’ll never just set out food again. There are so many different shaped containers that can fit any style that you are going for, then just put some ribbon on that matches your theme, and these will work for almost any occasion. Having fun shaped containers just makes a snack area/candy bar look more unique, cute, and put together. There's a lot of container options at Party City or any craft store!
Clear jewels
Just throw some of these on a table and then the area looks well decorated and great! These are also really cute to put in the bottom of a jar with a light and water.
Ideas for Black & White Snacks (I added Pink Too!)
Milk chocolate & white fudge covered pretzels
Oreos
Rice krispies treat
Famous amos chocolate chip cookies
Brownie bites
Powdered & frosted mini donuts
Zebra cakes
Hostess cupcakes
Hershey’s milk chocolate and cookies ‘n’ cream drops
Pink, black, and white gumballs, lollipops, jelly beans, Hershey kisses, chocolate coins (Party City has a candy section that is separated by colors)
Black licorice
Sour patch watermelon candy
White cheddar Cheez-It
Popcorn
Potato chips
I hope you are able to find a way to celebrate your medical journey and turn your experiences into something positive,
Comments