Who's That Girl?

Being the spouse of someone who suffered from Akathisia wasn’t something I ever thought I would be all those years ago when I first met and fell in love with my late husband but alas, I was. We were high school sweethearts and immediately we started building for our future and working towards our goals and dreams together. Yes, you read that right we started that from 16 years of age. We had many hurdles during the process but with every hurdle we grew stronger and closer and boy what a life we made for ourselves. And then it all changed about 10 years into our marriage. My husband began suffering from excruciating head and ear pain and suffered drastic weight loss among other issues. A list too long to even begin to explain. After seeing some doctors and having some tests done it was all chalked up to being anxiety related. He never had anxiety before but here are these doctors saying that’s what it is and prescribing him medications to “fix” it.

It became a vicious cycle of trial and error of different medications none of which helped anything, but in fact, gave him additional issues along the way.  “Let’s take you off this one and try that one” they would say.  “That one isn’t helping? Ok, stop that and try this!”  It went on and on for years.  More specialists, more meds and now even a few hospital stays because “All these things you are thinking, and feeling are just in your head” they would say.  They couldn’t have been more wrong.  With every pill they made him try and swap out the more pain, sickness and internal and external torture he would feel – otherwise known as Akathisia.  We didn’t know what it was at first but after a lot of research he figured it out.  Would you believe he even had a doctor laugh in his face? I saw it myself and it took everything in me not to jump across the table and to shake him for ridiculing and belittling him at a time when he needed them most.  Doctors are so quick to dismiss anything people say and for many reasons – I can’t begin to open that can of worms but let’s just say money talks and it’s easier to drug people up like zombies and to keep them silent rather than spending time, money and effort on trying to properly diagnose a person. 

Family can be fooled too – I admit there was a brief moment that I thought maybe the doctors were right and he was just going crazy.  But they couldn’t have been more wrong.  He was saner than anyone I know.  He knew exactly what was happening to his mind and body and what was causing it – that was part of the torture for him.  I too, like so many people didn’t understand what he was going through, and I trusted that the doctors had his best interest at heart.  I’m just glad that I was able to do my own reading and research and came to the realization of what he was actually going through sooner rather than later.  I can’t imagine turning my back on him.  So many families, friends but especially doctors are quick to dismiss and walk away from people struggling with Akathisia.  Being part of several groups, I see it daily.  People begging for others to help make their families and friends understand that they aren’t faking it or just trying to get attention.  They are sick and struggling and in pain on a level you and I will never understand – at least I pray that nobody has to understand. Can you imagine not being loved or cared for in your deepest and darkest moments?  That is one of the most common things that happens to Akathisia sufferers – family and friends abandon them, some of which even become homeless and it is because it is excruciating to witness and to support. I often sat there trying to console my husband as best I could, always trying to be as sympathetic and empathetic as humanly possible while also trying to get to the real health issue that started this whole situation.  Although I couldn’t feel his pain my heart broke for him every single moment of every single day when I saw him in his tortured state.  I wouldn’t wish what I saw on my worst enemy to say the least. 

As my late husband used to say, there was nothing I could do to help him but just listening to him when he talked about his feelings, his fears and pain, believing him and his struggle and loving him regardless of this illness was incredibly important to him. I truly believe that is all anyone wants in this world – to be heard, understood, and loved and even more so when you are in your worst of moments. People even looked at me as if I was crazy for staying by his side but the way I saw it if my spouse was diagnosed with another illness (cancer, MS, dementia, etc) would I abandon him then? So, what makes this illness any different? Is it because it isn’t as familiar or isn’t known in most households? Maybe, but when I took my vows many years ago, I promised to love him through sickness and in health and I meant every word. It is very easy to get frustrated, to feel isolated, sad, alone and even angry at times because you feel helpless as a spouse and in many cases, you are carrying the weight of the world on your shoulders too. But I would hope that if the tables were turned that the person I married would stand by me in my moment of need. Isn’t that what a marriage is all about? Supporting one another no matter what? Everyone is quick to sign up for marriage when it’s all rainbows and fairytales but when things get tough, and I mean REALLY tough they are so quick to just abandon ship.

I’m not here to say that it is easy or that there is a particular way that you need to be there to support someone suffering from Akathisia, but rather to simply give you a glimpse into this horrendous illness itself from the point of view of a supportive spouse. I am using this platform to let you know that those who choose to stay in the lives of those suffering have a battle ahead of them like no other as well, but that this is very real and to believe them.  I am not saying that you shouldn’t trust doctors or take any medications, but I am simply asking people to research and learn as much as possible before taking anything so that you are properly informed of what it can do to you.  I am asking people to be advocates for themselves and their loved ones.

They say time heals everything, but in my heart and head I will never be fully healed from this. I will never be ok with the fact that doctors dismissed for so long what was eventually diagnosed as an autoimmune disease and for treating him for something completely unrelated. I will never be ok with those same doctors not trying to understand, not being more compassionate and more importantly that they wouldn’t educate themselves on something they weren’t fully familiar with. I am thankful for the doctor who in the end did help him as best he could even though the damage was already done.

What I can do is continue to speak his name and of his love, generosity and great strength. I will keep one of my many promises to him and continue spreading awareness of this disease until more doctors rather than just the few that currently know about it are properly educated. And finally and most importantly, I will continue to pray and send strength to any other warriors who are suffering from this debilitating illness as well as their families.

LM