February 29th is Rare Disease Day and we are so excited to wear our shirts for it that we just got! As important as spreading awareness is, I want to talk about family & friend support. This is how awareness is spread. I'm in awe how any chance my family and friends get, they will ask or tell about EDS and then usually the other comorbidities I have. I knew I would spread awareness, but I didn't realize the impact my diagnoses would have to inspire others close to me to do the same.
I have made a blog series called Human Beings are God's Love Language, but I have to make a post about my family and friend support. Since I have started this blog, I have been overwhelmed daily by the support I receive by my family & friends. My husband is always shocked when I tell him that others don't get to experience this, there are many that are not believed and not supported. It means so much that family and friends want to support and learn about my rare illnesses. Awhile back I stumbled on a YouTuber with EDS and POTS, unfortunately she lost her life. When I was searching more about her I also stumbled on multiple sites of people bashing her right after her death and saying the cruelest things that she didn't really have any of these illnesses and was making them up. Shock. Just shock. This beautiful soul wanted to help spread awareness and was mocked for it.
My sweet family and friends have specifically asked what not to say. This is a great article for that:
14 ‘Harmless’ Comments That Actually Hurt People With Ehlers-Danlos Syndrome
This article explains helpful ways to be there and what TO say or do:
To the Friend or Family Member Who Doesn't Understand My Illness
I am so fortunate that we had people who did a lot of these in this article especially after my surgery:
10 Practical Ways to Help a Friend During a Chronic Pain Flare-Up
One of the biggest things that has changed about me because of my illnesses is my unpredictability. I used to pride myself on being reliable and punctual to a "T." Planner was an understatement. When I had to start cancelling plans on people I was so afraid of doing this often and multiple times that I just stopped trying or making plans all together. I hated the fear of disappointing people I care about or them thinking I was flaking out on them. It continues to surprise and overwhelm me that I have friends who still invite me even when I've had to do rainchecks too many times to count and always have an excuse why I can't. It doesn't hurt any less and causes guilt when I still have to do it (even though they understand and don't expect). These people are blessings to me.️
For those of you who have asked to donate (and thank you so much to the ones that already have), here's the most reputable non-profits for my illnesses that give money for research & awareness:
-The Ehlers-Danlos Society
-National Organization for Rare Disorders (NORD)
-National MALS Foundation
If you would like to buy a shirt or gear to support, here are some of my favorite websites:
-Spoonie Shop (10% of procceeds go to NORD and she's a good friend of mine with similar issues)
-Hope Essentials (another friend of mine who's proceeds go to her and her sweet little family)
-EDS Society
-National MALS Foundation
I loved what a woman from my MALS Facebook group said recently and would like to pass on Nancy's words: "The nicest thing you can say to anyone with an invisible, chronic, mental, or undiagnosed illness is, I am listening and I believe you." This explains why that is so true and how validating it is for someone with a rare disease when they do get that. Thank you to my family and friends who have given me that and so much more ❤
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