Posted on January 21, 2020 by dragonspitapothecary
I’ve actually had this post written for months but it never felt right to publish it. I would occasionally see it in my drafts and pass by it not wanting to talk about it. I didn’t want to talk about it at home anymore either much less write about it and yet I did. I know the message in this post is important and I know there are more out there just like me but I hesitate. It brings tears to my eyes every time I read it and sometimes the hard to stuff to share is exactly the stuff to publish but it feels so vulnerable. There has been so much vulnerability and pain in this process that putting words to paper about it just sometimes feels like fresh pain and I would welcome a reprieve from the pain this illness has already caused in my family without the necessity of this post. Yet I have already endured more than I ever thought I would in my marriage these past 3 years and some times it just feels like the pain will never stop and so I share this post.
Meet My New Husband
My husband has suffered from PTSD and chronic anxiety for over the past three years. During this time he hasn’t worked and walked away from a job he loved and held for 28 years. This was hard for him emotionally because he loved the place he worked and seriously not many of us can say we’ve stayed at the same company our entire careers. The first year he barely got out of bed and was strung out on prescription medications that kept him exhausted and angry. Yes then there was the anger, the pure rage that would spew from him over little and big things and you just didn’t know what would set him off. There were several medications and lots of Xanax as his doctors tried to figure out what was going on and how to help him. Once the diagnosis of PTSD and chronic anxiety became labels applied to him we thought we could then deal with it and there would be help. There wasn’t help though only more prescriptions and a whole new set of challenges.
This being difficult enough to deal with there were several other things also occurring that added to the challenges of helping him, living with him and keeping our family together. First there was the loss of his income and health insurance. For many families it is just not possible to live the same on half your income and it was certainly the situation our family now faced. It was and still sometimes is very scary financially. We have always been careful with money mostly but having this secure job all of a sudden be gone and not knowing when or even if he would be able to ever do it again was stressful and a hit for our family’s financial safety net.
There was also the loss of friends, people we had known for years that just stopped coming around or inviting us to things. Granted there were now a lot of restrictions on what we could do for outings as a family. We couldn’t do simple things like go out to eat because he would be too overwhelmed. We could no longer take trips to the grocery store or park because it was too much and we didn’t know what would set him off. It felt like being trapped inside our home with an angry monster and no one was coming to help. No one was offering any type of relief or support and no one even checked on us.
He wasn’t comfortable leaving the house and even now three years later he struggles to do basic errands. Just the other day he sat in his truck for 30 minutes in the driveway before giving up. All he was trying to do was go to the store to pick up pool salt. A basic every day errand. He would stop sleeping for days and still suffers from either oversleeping or not sleeping at all. He also stopped eating and has lost a lot of weight during this illness. He talks of killing himself and saying he we don’t need him, that he is just a burden to us and does nothing but let us down. He grew his hair and beard and started skipping taking a shower every day. He became this totally different person we no longer recognized. Gone was most of the loving gentle spouse and father we knew him to be. The once strong handsome man I fell in love with that was so capable, funny, spontaneous, strong and outgoing was just a shadow of himself now.
He’s Just Faking It
If his diagnosis had been some other horrible disease like cancer I often wonder if the response or support would have been different. I know financially it definitely would have because it would have been unquestioned and rubber stamped by Social Security and the multiple people we’ve had to work with trying to get him help. There would have been programs, support for his family and even fundraising and charitable events like runs. I am glad his diagnosis wasn’t cancer but I can say it is just as devastating and just as impactful to him and our family as if it were.
I can say I honestly don’t know when it comes to friends or family if their response would have been different. On top of dealing with something neither of us knew about and struggling to find help many of our friends, family and his employer walked out of our lives. They didn’t believe this was something that could happen to people unless you had just come from a war and even then it was something that could be “cured.” Just pop an antidepressant like everyone else and go on with your life already was the feeling we got from them and no one could understand why he wasn’t bouncing back. Instead each day was a battle in our home to care for him, encourage him out of bed to try something or even just eat.
We also have a young son that we worried over the impact of this from and not penalize him for what was happening. Our son couldn’t understand why we couldn’t go do things as a family anymore and soon got used to hearing dad just doesn’t feel good today. He also had to get used to going to places with just mom now including errands so we could let dad have quiet. While we were out I’d worry all the time about my husband and try not to be gone for too long. For a long time I made our son wait in the car or outside when we would return home so I could go in first. I honestly didn’t know what we would walk into including worrying if he was really going to take his life to get out of the pain he was experiencing.
It was also hard for our son getting used to dad not being able to go to school events to cheer him on. We had to tell him his friends couldn’t come over to play anymore because of the noise and dad not feeling well. When we would plan to go on vacation to fun places and experiences he’s now used to doing things with mom while dad hides in the hotel room completely dark if he even tries to go at all. I try to make the best of it but it only adds to the burden and hurt I feel too. It honestly is hard to be in a fun place trying to have fun with our son when you know he’s home or in the hotel suffering and missing out.
The System Meant to Help
In this process we followed all the steps to use his short and long term disability insurance while he tried counseling and continued trying to find right medication to help him. After the first year and half we were advised by the disability company to consider filing for permanent disability with Social Security. He hadn’t improved and it didn’t look like he would be able to return to any type of work. They told us upfront with the diagnosis of mental illness it would be incredibly challenging to get this approved. Apparently our insurance, health, financial and government systems are so broken that mental illness is not fully recognized as a disability. We started this process with hope and each time we there was a request for tests, exams, clinical notes or other information we provided it. There was no doubt at this point he was sick and we thought there were programs and support to help him and us. This is why these agencies and programs exist right? There aren’t that many by the way and it’s extremely invasive in what agencies demand to prove you have a mental illness.
Working through the disability process for a mental illness has been a challenge all the way. Even our attorney told us the reason for it is because so many people have ‘played the system’ resulting in increased scrutiny and extensive steps people need to know take to get help. It’s exhausting and time consuming. It is setup so a person shouldn’t show they have made any progress at all either the entire time this has started. There is no room for getting better and doing so is the death to getting any help. Yet you are expected to appear in courtrooms, required second opinion exams and fulfill complex forms in a timely matter just like a normal functioning adult.
Each time we have to go to a hearing, required government review medical exam or request his medical records he triggers backward and any progress is quickly lost again. I don’t think I ever saw my husband as scared as he was the day he had to go into a hearing with just his attorney. Family isn’t allowed to go in those hearings, just him. For over an hour I sat in the stark waiting room worried for him and praying he didn’t explode or something would happen and he would spiral. How is it ok to think we should take someone who is struggling with PTSD and chronic anxiety and make them go into a small windowless room with strangers to talk about his illness and answer questions about why he did or didn’t do certain things for the past couple years justifying why he needs disability. Let’s not worry about the 2 weeks leading up to that where he didn’t sleep or eat worrying and was in hyper anxiety for it or the time afterwards he spent laying in bed from being overwhelmed with that either. Yet he is just faking it right?
There is also a lot of scrutiny for trying things outside of prescription medications even when you work with your doctor on them too. Seeing my husband take upwards to 12 or more Xanax on top of antidepressants and opioid pain medicine to function a day pushed me to see if there were other things we could use to help him. We were quickly told things like essential oils and natural treatments should be kept quiet because they are greatly unaccepted as course treatments by the Social Security process. While these solutions have helped my husband not need a dozen or more daily Xanax we’ve had to keep that to ourselves and fill prescriptions for things because the government won’t accept there are other treatment options available besides addictive drugs. (If you suffer like he does and would like to try what we found has offered some relief please click here: dragonspitapothecary.com/support)
While that process has been extremely challenging and continues to be something that will trigger my husband spiraling downward destroying any progress we also heard from his family, that they didn’t believe he was really sick. One even said he didn’t deserve disability and was just faking it. It was like being punched in the gut. No they obviously haven’t been around to see the days he struggles to get up and take a shower or isn’t able to do as much as walk to the mailbox to get the mail. They somehow must have thought he was just being a crummy dad for being unable to go see a painting of his son’s that was submitted to the State Fair by his school. Or he must just be a terrible husband who doesn’t help around the house and puts it all on his wife simply because he’s a jerk.
While he has struggled every day, I’ve had to become our primary breadwinner, bill payer, cook, house worker and a lot of other responsibilities that are typically shared in a home. There are times it seems our now 8 year old son is more independent and helpful than my husband. And yet we still lack help, support, check-in from caring friends and family or just an opportunity to step away from it and know someone cares for us. This is something our entire family carries every day with us on our own. There is nothing fake about it.
Why I Stay
Of all the hurtful painful things people have said or done through his illness, the most painful has been the question about why I stay with him. I have struggled with why this is even asked to be honest. Would they ask me this ridiculous question if he were dying of a terminal disease? Do people really leave marriages in those situations? How is mental illness seen so drastically differently?
No this is the not the life either of us imagined and it’s not how we thought we would be spending our time well before retirement. Instead of building up savings for retirement, enjoying our family and living a “normal” life we are living in this hell that never lets up. We are living it mostly alone and without support of people who say they care about us. We are doing the best we can every day. This is our new normal and no it’s not pleasant or pretty.
Someone doesn’t decide one day to have PTSD or chronic anxiety. They don’t just one day wake up and say I’m going to screw up my job, let down my family, break their hearts and be an asshole to them as much as possible and go on disability for the rest of my life. No one decides to have a mental illness and no one wants it any more than they want a cancer or other terminal illness.
Mental illness is every bit as devastating, painful, weakening and terminal as physical diseases. It robs the person and those closest to them us of so much life, love and experiences just like a cancer. It hurts physically, emotionally and spiritually for him and us just like a terminal disease. It is in fact it’s own type of terminal disease and living daily hell.
I stay because I love him and still tightly hold hope he can come through this even a little. I live up the days there are signs of his old self coming through. Those times are cherished knowing they won’t last because there will be something that triggers him to spiral downward again. But for those brief moments when I hear him laugh again or see him smile a little it fills my heart that maybe we can overcome this one day.
If you’d like to connect and share your own experiences with living and loving someone with a mental illness please visit my website’s Member’s Forum at dragonspitapothecary.com/Member-Forum