If you know someone with Meniere's disease, you should read this. If you know me, and are a part of my life, then you should definitely read this.
1. It's completely fine to ask me about anything related to my condition! I would rather have you ask than make assumptions. MD is not a sensitive subject to me, and I'm happy to fill in the gaps!
2. My condition is permanent. My hearing loss is permanent. Please don't ask me a year from now if my ear is all better - it won't be. There's no cure for MD, and this is something I'm stuck with until there is one.
3. If/when I say I can't hear you, I mean it. Please accommodate to that, and speak up, or write or type what you need to say to me. Or, if you know Finnish or American sign language, you can sign to me ;)
4. When I have vertigo, please know that it's quite debilitating. If I ask you to drive, it literally means my world is spinning out of control and you do not want me operating heavy machinery. My vertigo attacks usually occur gradually, so if I tell you I can get home by myself, please take my word for it. I will ask for your help if I need it, I promise. I prefer to ride out the attacks alone.
5. I don't need pity from anyone.
6. I do, however, really appreciate support and understanding. Conversing with someone who understands even a part of all this is great. I'm all for peer support!
7. Sometimes I have to cancel plans at the last minute because of my condition - I'm either having a vertigo attack or I might just be exhausted for no apparent reason. There's tired, and then there's Meniere's tired. Please understand.
8. Oh, I don't look sick? Well, you don't look like a doctor.
9. Meniere's disease is a part of who I am, and it's definitely not the worst thing in my life. I have gained more than what has been taken away from me, so don't think this disease ruined my life.
10. No, I really didn't hear that.
11. My hearing aid is not a miracle cure. It amplifies sounds and helps me in crowds in particular. It doesn't give me my hearing back, but it slows down the progress of my hearing loss.
12. I'd never heard of this disease either until I was told I might have it. There's not a lot of research out there, which sucks.
13. As a friend or a family member you might want to do a little research on your own about Meniere's disease. It will help you understand what I'm going through or someone else you might know who has MD as well. I know I would appreciate that.
14. Everyone's experience with MD is different. If you know someone else with MD, you can't compare them to me. Please don't think that just because they're experiencing vertigo on a weekly basis it means that I am too. The medication I'm on helps me, but I know it doesn't help everyone. No two cases are alike with MD.
15. Once you've educated yourself on Meniere's disease, please don't start lecturing me based on what you've read or heard. I've lived with this for almost six years now, and I know what works for me and what doesn't.
There are way worse things in this world than Meniere's disease. Personally I'm not a fan of all the social media groups out there, that paint a wrong kind of picture of this condition. They make it look like MD ruins everyone's lives, like it's some kind of a monster that just hovers over people. I know that MD has hit some people bad. I guess I'm one of the fortunate ones. However, I wish more people like me would be more vocal about how this disease is manageable and not the end of the world. It seems that only those completely shattered by MD are sharing their stories in many groups, and it makes me sad.
I hope this post helped you understand my point of view a little better. Thanks for reading!