The struggle with invisible illnesses like Tinnitus
You can´t see our pain. There is no visible cause. We have no disability to show for. Ear ringing is not something you can see on the outside.
So it must not be true – that we are struggling so much.
Isn´t that how you feel you get treated?
People would say that I look just fine. That I didn´t look sick or bad in any way. So how could I not feel well?
For the longest time I didn´t take myself and my condition serious because of that. I thought it was not real, it was not something that should make me suffer. I felt it was my fault.
I felt guilty for feeling like that and not having any prove for how I am feeling.
The worst part was, that it was not only friends or strangers or family who made me feel like that. No, it was doctors also. They told me, no there is nothing wrong with you. Your ears are fine and anatomically everything is ok. I had MRI´s, x-rays and ultrasounds done. There were neither abnormalities nor irregularities. I was told that I was ok. But I was not.
Not getting taken seriously, being told over and over again that I was not sick made me feel even worse. Being treated like a stubborn child that doesn´t not want to accept that something is true or not true . . . this, I am sure now, contributed to falling into a deep depression.
Once I had a depression of course and couldn´t stop crying, I was told that I had a depression and had to take anti-depressants or go see a psychologist. About feeling down of course and about finding the joy in life again, not about my tinnitus.
I asked myself why do I hear it and why does it influence every part of my life it is not real. How can it make my life a living hell if there is nothing wrong with me?
I can’t even begin to tell you in what a deep dark hole I was. The ear ringing was already making me crazy, but dealing with the feeling at the same time that nobody took my suffering and my condition for real made it a 100 times worse.
So how to deal with invisible illnesses?
Why do we need a validation for our struggle?
You know what you feel and you know what your body goes through – only you have been through that experience and this experience is real.
It took me a long time to realize that.
I went to a natural healer at that time and she really helped me to get in touch with myself and my body again. A lot of times we just sat there and I had to close my eyes and tell her what I felt or thought. So we differentiated between thoughts and feelings and emotions. We are not our thoughts, thoughts are something that might be fears, something repeated from an outside voice or just pondering around. Emotions are old feelings, that we didn´t allow ourselves to feel and just stuffed them down, they stay there as deep feelings that produce fear and anxiety or negative predictions. Feeling in the sense of what my body felt, so if I could feel the blood rush through a certain area or if I could feel where my pants touched my leg or where my feet touched the ground. And then later on where did I feel an itch, a pain or just something that made me feel uncomfortable.
Through those exercises I learned to take my body serious again, to trust my body again and not the opinions of others.
I know what I feel and my feelings are real. They are true because I feel them. They are there because I feel them. No matter what others say, just because they don´t see it – they don´t believe in it. But I learned to believe in my body and in my own opinion and feeling again.
I took myself serious again. And I took my condition serious again.
Never think you need someone to validate your feelings or your condition. You know what you feel and you know your body. You are the only person that knows if there is something wrong or not.
When I got my tinnitus I was sick a lot, every few months I had sinusitis and / or ear infections. My head hurt almost all the time and my mind fog was so strong I was afraid being alone and killing myself by accident. Of course that affected my job.
Of course when someone at work breaks a leg, everybody feels sorry for them. They stay at home until the leg is healed or at least good enough to walk properly with a little help. Everybody understands that.
When you have an invisible illness – what should they understand? They see that you are distracted all the time, that there is nothing to feel sorry for because they can´t see anything. So they wonder why you are out sick all the time.
I have learned, for that you need a doctor that takes you seriously. Someone who understands your struggle and who gives you a doctor’s note when you need it. This helps you with your accreditation at work.
Invisible illnesses are just not as accepted by society as visible ones. Luckily that is changing, but with a doctor covering your back facing society is easier.
This leads me to my next point –
Sensitive and understanding doctors
Going from one doctor to another and every single one of them treating me like I was making up the problem, but there was no real problem made my situation even worse.
It took me a while to realize it, once I did I told my friends how I got treated by most of the doctors I had been to. Having friends recommend doctors really helped, I finally a doctor I trusted completely. She not once gave me the feeling that my condition wasn´t real. I could go to her office any time I needed to without having an appointment. She seemed to understand how the ear ringing made me feel and what I was going through. I could talk to her about anything.
She not only tried to improve my health, she also helped to find my self-confidence again. Being taken seriously by a doctor really helped me to accept and to be able to deal with tinnitus.
From that moment on, I decided to not put up with rude doctors anymore. I would just go to the ones who would treat me with respect and try to really help me as well as to improve my situation.
Having a doctor like that really made a difference in my healing process.
Don´t accept any behavior from your doctor – go to hundreds of doctors to find the one that cares about you.
Feeling limited, not being able to live normally
When my tinnitus got really loud, I not only got depressed because I thought that I couldn´t live like that – no I also felt very sad because I thought my life as I knew it was over.
I could only see what I couldn’t do anymore or what I wouldn´t want to do anymore due to my ear ringing. I didn´t feel like going out, because it was too loud and I never understood what the others said. All my friends went out all the time, I was sure I was missing out. In general social situations became more and more difficult so I tried to avoid them when I could. But again, even though it was my choice I felt like my life was just not a normal life anymore.
Watching movies or listening to music became a problem, because I needed it to be as loud as when a grandma was listening.
When did that change?
On what was I missing out? On life? But I was still alive, but lived like I wasn´t. I just got sick of not enjoying life and of feeling limited.
The change actually happened when I had taken on a more positive way of thinking again. I became interested in different things, in finding myself, in reading about alternative healing and finding always new ways of reaching inner balance. With that kind of interested I didn’t have the feeling anymore I missed out.
Even though this ear noise might limit me, it might have changed my life – it just didn´t feel as important anymore as my focus had shifted.
Make your focus shift and you will see that you won´t feel as limited anymore.
Shift where to?
Where ever you want. Whatever you are interested in, that doesn´t have to do with those things you can´t do anymore. Once you do those things you are interested in – you will see that you point of view will shift automatically.
Feeling lonely and embarrassed
Being different than most of the others is difficult, being different because of an illness is even more difficult.
There was a time when I didn´t want to talk about tinnitus or how it made me feel. I was embarrassed that I had a condition that limited my life at such a young age.
Like I said social situations became more and more difficult, not just because of hearing problems or loud noises, no also because of social anxiety. I didn´t know what to talk about with others.
They would talk about problems they had and I just couldn´t pretend to understand, for me they didn´t have problems as I thought only I had a real problem. All I wanted to talk about was how I felt and how this tinnitus had changed my life. But I didn´t, I was too embarrassed to let others know how I let myself get dragged down by this ear noise.
So I participated less and less in conversations and met up less and less with friends. I didn´t want to share my suffering – I was so ashamed to suffer that much. To not be able to handle it.
It was not that people didn´t want to be with me anymore, the case was that I couldn´t stand being with people anymore. I drove myself into loneliness. And then suffered through it even more.
I was sure no one could understand me, I was sure no one was able to like me anymore or enjoy hanging out with me as I had nothing than problems.
Make sure to realise than these are only your thoughts.
It took me way too long to understand that these where only my thoughts. It was all in my head. People really tried to understand what I was going through, they tried to meet me half way and met up with me at places that didn´t hurt my ears and their feelings toward me hadn´t changed at all.
Through conversations with friends I got convinced that I had brought myself into that loneliness and that could leave it any time I wanted. And it was true. It was just like that. Once I decided to do more things again and to meet up and hang out – it was possible and I tried to understand that everybody has his or her problems and they weigh just as much as my tinnitus.
And I started talking about how I felt and what this tinnitus did to me. Sharing my story and my feelings felt really good. It helped being seen and heard by others.
As you see, an invisible illness is not an easy one to carry but nothing is impossible. You can feel better and you can make it seen. Listen to yourself and to your body. Only you know what you need and what you feel. Listen. And then act accordingly.
This life is too short to be a victim of our condition! Become the boss of your life and your illness and you will feel better really soon!