Dear Newly Diagnosed With Reverse Slope Hearing Loss

Three months ago I was diagnosed with severe RSHL (reverse slope/curve hearing loss).  These last three months have been a whirlwind to say the least.  I have learned a lot of things during this process, but the biggest thing I learned is there is not a lot of information out there on RSHL.  And by “not a lot,” I mean pretty much nothing.  Like literally, nothing.  Not only did both my ENT and AUD doctors know very little on RSHL besides the fact that I am “pretty unique” (aww shucks, thanks guys), but the vast online world doesn’t have much to say on the topic either.  I want to change that.  I still don’t know a whole lot, but I know more than I did three months ago, and I know more than the average human…and let’s face it…average ENT/AUD.  This is what I would have wanted someone to tell me the day I got diagnosed with reverse slope hearing loss:

  1. You are rare: Like, not in a “everyone is a special snowflake and unique in your own way” rare, but really, the type of hearing loss you have is really freaking rare.  The thing with RSHL is since we can usually get by day to day with normal conversations, someone may be walking around with a mild form of it and not even know.  Heck, I have a severe form of it and I didn’t even really know.  From what I have found, there are only 3,000 of us with RSHL is North America.  Three thousand.  That is it.  Considering there are about 579 MILLION people in North America and there were over 4,000 students in my high school alone, 3,000 is a freaking small number.  It makes sense that ENTs and AUDs don’t know what the heck to do with us.  They can go their entire career without seeing someone with RSHL.  And when one of us walks in their door?  They don’t want to act like they don’t know what the heck they are doing, because who wants a doctor that says they don’t know what they are doing?  This arrogance unfortunately leads to people with RSHL not getting the help they need and deserve, and they go through life with either crappy hearing aids that don’t work, or they give up on them entirely. 
  2. You need to be your own advocate:  From what I have read, what I have experienced, and what I have found talking to others with RSHL, you can’t rely on your ENT or your AUD.  Most likely they know jack squat, but remember, they don’t want to actually tell you that.  They may call you crazy, they may tell you that the sounds you hear are something you are making up in your head, they may tell you that you are wrong, they may tell you that “all” you “need” to do is adjust to your new life.  I am here to tell you they are wrong.  You are right.  YOU ARE NOT CRAZY.  Seriously though, you aren’t.  A friend with RSHL told me those words and they were some of the most empowering words I heard my entire journey.  You are not crazy.  Stand up for yourself.  Be your own advocate.  I can tell you this because I am pretty spineless and I am horrible at standing up for myself.  If you are like me, here is a step by step guide of what you need to do:  First, demand a copy of your audiogram (hearing test).  They legally have to give you a copy.  Make your ENT or AUD sit down and explain every little piece of it to you.  If you don’t understand what they are saying, make them stop and explain it more clearly for you.  Keep asking questions until you understand.  If you still have questions, here is a website and another and another that answers general questions about how to read your audiogram.  Second, make sure you like both like your ENT and AUD, and they have experience with RSHL.  Literally ask them how many people with RSHL they have treated.  Ask them what they found to be successful with those people.  If they beat around the bush or make you feel like your hearing loss is no big deal and they will figure it out, find a new doctor.  Period.  The ONLY time I say it is OK to deviate from this is if you cannot find an experienced doctor, because they are rare.  If that is the case, find an AUD that is open and honest with you about their lack of experience, but are willing to do everything in their power to help you.  You WILL be going in for hearing aid adjustments every few weeks for months or years or your entire life.  You will hear weird sounds and swear the aid is broken, you will have very strong feelings about particular types of aids and what does and does not feel good to you.  Make sure you tell them exactly how you feel.  If they ever make you feel embarrassed, or crazy, or wrong, find a new doctor.  You will be seeing A LOT of this doctor, make sure you like them and trust them.

    aud
    Here is my audiogram.
  3. You need to learn everything you possibly can:  Though this goes hand in hand with number 2, they are not mutually inclusive.  Like I have made clear, your ENT/AUD probably won’t know what the heck to do with you.  Because of that, you need to find out what the heck to do with you.  Read everything you can and talk to everyone you can.  First and foremost if you do nothing else I recommend, read “The Bizarre World of Extreme Reverse Slope Hearing Loss.”  It was hands down the best thing (and pretty much only thing) I have found worth reading related to RSHL.  It is a long read and filled with an overwhelming amount of information, so make sure you really wait to read it until you have both the time and the mental stamina.  I have re-read it a few times and I still pick up on something new each time, so read it as many times as you can.  If you want to hear about my journey, you can read my reaction to getting diagnosed with severe hearing loss, and how I struggled finding hearing aids to work for my reverse slope.  I wish I had more for you to read, but sadly I don’t.  I will continue to update this list once I find more information.  If you have read something beneficial to you, please leave a comment below because I am still learning myself.
  4. You need to find your support:  Even if you have the most supportive friends and family in the world, they won’t get it.  And that is OK.  Even if you know people who are hard of hearing, they are GREAT resources, but they still won’t totally get it.  I posted a cry for help in a Facebook group for Otosclerosis (the type of disease I have that caused my RSHL) and I found another lady who also had RSHL caused by Oto.  We started chatting and turns out she lives less than an hour away from me!  She and I, along with a friend of hers who also has RSHL, got together for dinner last week and it was magical.  Talking to others who truly understand what you are going through is so incredibly powerful.  If you are on Facebook (who isn’t?) search “reverse slope hearing loss” or click here.  There is currently one group; join it.  We understand what you are going through.  If you want, email me and I will talk you through it.  I understand what you are feeling and I will help you in any way I can.  This Saturday I will be going to my first HLAA meeting with my two friends I had dinner with and I look forward to meeting more people there in the hearing loss community.  Click here to find an HLAA chapter near you.  I have made friends in the hearing loss community everywhere; friend’s birthday parties, in the grocery store, in the waiting room for my AUD (obviously a great place!), and online, just to name a few.  If you see someone wearing a hearing aid, kindly bring it up to them and chances are they are happy to talk to you and answer any questions you have.  Even though these people will probably not have RSHL, they can still support you and sometimes they have contacts to great doctors and other resources.  There are 2,999 of us out there who support you and understand what you are going through, you are not alone!
  5. You can do this:  No seriously though, you can.  If I can survive this, you can too.  It will be hard, it will be tough.  You may cry (or like me, cry a lot), you will get angry, frustrated, confused, and embarrassed.  But on the flip side, you will come out of this a stronger person.  You will be more compassionate.  You will be a fighter, a self advocate, and one hell of a RSHL expert.  You will help others who need it.  You are badass.  You got this.
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