Hearing loss, along with many disabilities, requires a ton of self advocacy.  The best way to get good outcomes is to communicate what you need to be successful.  However, knowing the importance of self advocacy does not necessarily make it easier.

Self advocacy with hearing loss sometimes feels like a really awful catch 22. I am trying to let people know I struggle with communication by communicating. I literally have to engage in the challenging task to advocate. So I can be both advocacy fatigued and hearing fatigued simultaneously. Hopefully, the advocacy happens early on and helps reduce the hearing fatigue, but not every situation is that elegant.

Self advocacy can be difficult because of personality. Being introverted can make speaking up to strangers or sharing really personal details with people you aren’t close to an extremely uncomfortable experience. Also, if you are a people pleaser, it can be really hard to ask for something for yourself as you worry about being a bother. Sometimes, you are used to being the helper in a relationship and that can make advocating for yourself very difficult.

Self advocacy is also trying because it isn’t something that reaches completion. It’s not like you can safely skip self advocacy today because you did it yesterday. It is an ongoing and consistently draining experience.

Some days you just don’t have the energy to do the extra steps to advocate for yourself. Sometimes you feel like you stand out like a sore thumb when you have to advocate for yourself. It can feel awkward to share your personal health information in situations where that level of intimacy isn’t natural.

While I think self advocacy is never easy, there are things that have made it less difficult for me over time. Practice does truly help make it less hard. I have created scripts for specific situations which make it easier for me in common situations. Not having to reinvent the wheel helps save some time and energy. I also find that over a decade of hearing loss has helped soften my sensitivity in talking about it. I find that if I feel comfortable discussing it, that goes a long way toward helping the person I am communicating with to feel comfortable as well. I also frequently try to front load the work of self advocacy- texting friends in advance or reaching out to the venue before attending so I am not engaged in a battle when I want to be enjoying myself.

I have found that at times I can ask others to help advocate for me. I do this in moments where I am very fatigued by advocacy or where I think I may really struggle. For example, if I am trying to address my hearing loss in a situation where I really can’t hear well, sometimes my husband will step in and advocate for me because it is much less hard for him to hear at that moment. At other times, my friend will just take a turn being my advocate to give me a respite that I greatly appreciate.

I think it is really important to recognize baby steps on this path. When I first started working on my self advocacy, I found it truly daunting. Now, looking back, I can see how much progress I have made. I still have further steps I want to take, but I am grateful for how far I have come. It’s ok to take your time feeling comfortable asking for things. I think it is important to recognize the small wins as they come. Don’t be like me and struggle with feelings of failure because your goal is still at a distance. Keep encouraging yourself to work more on sharing your needs.

If you are just starting on the path of self advocacy, start by thinking about what your needs are. If you don’t know your needs then you won’t be able to communicate them. Once you have a handle on what you need, you can practice different ways to communicate those needs and see what works well for different people and situations.

Hopefully this hard work does result in a better ability for you to participate and enjoy life. Keep in mind that most people do want you to be successful and happy in everyday situations. But I would certainly budget in some fatigue from self advocacy. It truly does take a lot of energy to be a self advocate. Though I do feel as though I have built up my self advocacy “muscles” over time, increasing both my tolerance and skills. I expect that self advocacy will never be inexpensive for me, but I certainly recognize its value.