Sudden sensory neural hearing loss (SNHL) — Scope | Disability forum
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Sudden sensory neural hearing loss (SNHL)

APickle
APickle Member Posts: 11 Connected
edited September 29 in Sensory impairments
Hello all, I'm new here so I wanted to say hi and reach out to people with a similar impairment to mine.  I have had mild-moderate Sensoryneural Hearing loss (likely autoimmune) in one ear, which was manageable over the past 2 years.  I suddenly lost some hearing in my 'good' ear at the end of last week, so it feels more like a life-altering impairment and one that I am just beginning to adjust to. 

I got myself to A&E for a course of steroids and antivirals, and got an audiogram a few days later, which I've sent to my medical team. Things have happened fast.  When I lost my hearing in my 'bad' ear, I was not working and had no idea of what was available re assistive equipment and support groups, so the research is only just beginning!   Hopefully with decent hearing aids I will manage, and I have recently learned about equipment like the Phonak Roger pen and various treatments and implants. 

I have an underlying worry about a lot of things at the moment:  the impact it will have on my relationships, communication, and work.  I'm not currently working, but the work I do involves talking intensively to people and exploring issues and solutions, usually one-to-one.   I also worry about being misunderstood- being seen as slow or stupid as I've heard the horror stories!  I have been stereotyped and judged quite a lot in my recent life and this seems like another complication.

I feel like I'm rambling, but I'd love to hear about your experiences with SNHL and what helped.  Is there anything you know now that you wish you knew at the start?  Thanks!

Comments

  • Ross_Scope
    Ross_Scope Posts: 5,416

    Scope community team

    Hello @APickle

    It's great to see you posting on the community, and I wish you a very warm welcome.

    Thanks for telling us a bit about your hearing loss, it seems as though recent times have been about adaptation and learning for you, as you adjust to your sensory condition. It's a shame to hear that things took a turn for the worse last week but I'm glad you were able to access support.

    It's understandable to worry about those things you mention there, but I think it's important to be honest with people about the things you may struggle with and what help and support you need to overcome any barriers. With employers, talking to them about reasonable adjustments can be a good way of making a job more manageable. It can take time to adjust to living with a condition, especially one that evolves, but you will get there and end up thriving I'm sure :) 
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  • APickle
    APickle Member Posts: 11 Connected
    edited September 28
    Belated thanks, @Ross_Scope .  I'd definitely agree with being open about it, otherwise how would people know what to do differently.  I would speak to reasonable adjustments much sooner than I have done in the past, knowing what I know now about how they work. It's good to have someone in your corner. 

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