Rare Disease Day 2021: 5 Reasons Awareness Is Important — Guest Blogger Invisibly Me

To celebrate Rare Disease Day 2021 this February 28th, here are just 5 reasons why raising awareness of such conditions is so vital.

Rare Disease Day 2021: 5 Reasons Awareness Is Important — Invisibly Me

7 comments

  1. Oh no, Mel. I’m so sorry. That’s another thing on your plate you could have done without, I’m sure. Plasma infusion has been used for some patients infected with Covid too, to varying effects. I’ve no idea how many treatments you’ll need for general antibody support though – do you know? It’s absolutely a lot to get your head around, BUT you can get through it, as you’ve got through everything else you’ve had to deal with. I really hope this can be a significant benefit for you & your immune system. I’m always here if ever you want to talk, but no pressure. Process it in your own time. I’ll just send useless-but-well-meaning hugs your way xxxx

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    1. There are more tests to do before a plan an be drawn up but I should know in a week or two. I have so much research to do and I’m just not motivated o do it yet. I started when I first got diagnosed but I didn’t go down the rest of the road on what if treatment was needed and all the related information. I also don’t like the idea of getting someone’s blood. I know I’ve had blood many times but it seems so different.

      Liked by 1 person

  2. Thank you for this! I relate to so much of it. I also have a rare disease (along with some not so rare ones). One thing I really struggle with is bizarre symptoms that are hard to explain, and feeling like people just don’t get it..like I am going through this completely alone and no one understands why I can’t do certain things or how simple things can cause me to feel horrible. I’m learning that even though others cannot feel what I feel, or understand the extent to which I struggle physically, that doesn’t mean they don’t care or don’t support me. It’s okay that others do not truly understand. If I can barely put how I feel into words, I can’t expect others to really understand it. I’m working on listening to myself and my body, and calling the shots for me because the only person who can truly advocate for myself and my needs is me. I have to show up for myself first and foremost. Anyway, I enjoyed reading this and it really resonated with me. Thanks for sharing!

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    1. There are so many people with rare and not so rare illnesses so you are far from alone. We speak our own language and the key is to find people who speak the same language so that you can communicate with. I know many who are chronically ill, they may not have the exact illnesses I have but we have enough in common that we can relate to the struggles each has. I have found that once I was able to talk among people who also felt misunderstood it made me feel so much better. There are so many great blogs out there to follow and I encourage you to keep looking for ones you can find comfort and understanding in. Have a great day. I’ll check out your blog too.

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    2. I’m glad you liked my post but I’m sorry you can relate and know all too well what it’s like with any chronic illness, rare or not. It’s so very difficult when nobody ‘gets it’. This is why I’ve found the online realm so amazing, but others do ‘get it’ as they’re going through similar, they’re struggling, they’re not able to do day to day things and they don’t judge that I can’t either. I get what you mean about not being able to put what you’re feeling in to words. Most of the things I’ve had haven’t been simple and straightforward. I don’t have easy diagnoses and reasons for it, clearcut symptoms to easily describe etc. But I do think it’s possible to get to a place where you feel a bit more confident in yourself, your instincts and your ability to advocate for yourself. You do have to show up for yourself first, and you absolutely have the ability to that. You can do it. 💚

      Caz x

      Liked by 1 person

      1. You’ve learned so much and that’s positive! You didn’t just lay back and complain. You took your health into your hands and learned all you can to advocate for yourself and to make your best life. It gets tiring at times, I’m going thru one of those tiring times t=right now. I had the other foot fall, I found out last week I’m going to have to take Plasma Infusion treatments because my body only has a fraction of the players needed to make antibodies to fight off anything. Such bad news this week. I’m getting my head around. I’ll write more.

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