The day I was diagnosed with an autoimmune disorder was one of the happiest in my life – trust me I know how weird that sounds.
If you had been told for years that you had a personality disorder, mood disorder, psychotic disorder, etc because NO doctor bothered to do actual blood tests then finding out you have a biological explanation for the years of hell would make you happy too.
Biological explanation means there’s a treatment which means no more suffering – allegedly.
How does that happen? How does a person get misdiagnosed with a mental illness for years when it was a physical one that could’ve been fixed with an easy treatment?
It takes ONE doctor, who doesn’t care and will happily believe a family member who says they think you’re bipolar, writing that ‘diagnosis’ in your chart then your life is over.
Those medical records follow you everywhere. Now every time you see a new doctor trying to get help they look and see you were ‘diagnosed’ with a mental illness so no one bothers to ‘waste their time’ running tests. Pleas for help not only go ignored, making continued appointments are further ‘proof’ of your mental illness because you won’t ‘obey physician orders’ and you become labeled a problem patient, a drama queen, an attention seeker and worse.
You get referred out to psychiatrists who want to prescribe anti-psychotic meds and/or mood stabilizers. When you quit taking the meds because the side effects make you feel suicidal or create a knife-like pain so bad it feels as if your head was exploding from the inside out you get threatened with having your freedoms and rights taken away, threatened with being locked up in a psych ward – for your own safety of course.
Eventually you quit trying to get help. Your life spirals. Your health spirals. It becomes easier to believe the lies that there’s something mentally wrong with you, that you’re a waste of space and everyone would be better off if you were dead. So you stop living.
It’s a lot easier than you think to go from someone who once traveled around the world wanting to help people to someone who is so broken you think people are right and you should end your life so you can stop making the world miserable by existing.
I was luckier than most and met someone who believed I was worth it, that my life was worth it and the world needed me in it. He pushed to get me help and find a doctor who decided to start from scratch, treat me as if I had never sought medical help.
She ran actual blood tests and when those came back with questionable results she ran more. Then she sought an opinion from a specialist and finally told me I had an autoimmune disorder not a mental illness. Yes the disorder can affect my mental health, especially if it goes untreated for years like mine, and even more so if I’m surrounded by people telling me I’m a waste of space. Ultimately though what I had was easily treated through nutrition, a strict fitness regimen and medication.
I did well through her plan. I lost tons of weight and became mentally healthier that I had in a long time. Then my insurance overhauled its coverage and I couldn’t afford my medication anymore (it went from $10/mo to over $400). Losing access to my medication unfortunately coincided with a time of personal difficulties in finding out a betrayal of someone who I thought was a friend.
The combo caused me to give up eating right, working out or really caring about myself. To deal with my depression over the betrayal and the incessant joint pain that was now regularly knifing through my body thanks to no more medication I began to binge fast food daily while living on my couch or in bed with Netflix on 24/7.
I gained 60 pounds in just over three months which only added to the joint pain and depression. As the weight gain continued my quality of life headed towards bottoming out and I quit trying to live again.
I felt like all those naysayers from before were right, I really was a waste of space. I had my answers. I knew what was wrong, but instead of trying to figure out a solution to my medication problem and giving a giant middle finger to the trash I had allowed in my social circle I gave up.
Even worse as I quit living for myself I also quit living for my family.
In the Spring of 2019 I knew something really bad was happening. The joint pain had been getting steadily worse for a while with the weight gain, poor nutrition, sedentary lifestyle and not taking proper medication but this was something else. I began having sharp, continuous pain radiating from my lower back down my leg to my knee every time I stood.
By the time my kids were out of school for the year I had started losing feeling and control in one of my legs on top of the radiating pain.
The Summer of 2019 started off in a bad way. I was at the zoo with my kids one day and it was not going well. I had to take frequent breaks because my back was hurting so much and my left leg kept giving out. Finally I just sat down on the ground and called my doctor to get an appointment ASAP.
Over the next few weeks I would find out my autoimmune disorder was attacking my spine and without medical intervention I would lose the ability to walk. Well my insurance company being what it is decided they didn’t believe my doctor and demanded I go through other steps before they’d agree to cover the spinal surgery she was suggesting. Thanks to them I did in fact end up losing my ability to stand and walk before summer was over – that at least convinced them to let my doctor call the shots without their interference.
There was no sudden miracle but months of hard work, tears, screaming in pain, and many promises to my girls that I wouldn’t give up. I definitely had days when I wanted to stay in bed because the idea of facing the world using a rolling walker in my 30s was mentally defeating. I hated going to my kids school and having the “gossipy, think they’re better than you PTA type moms” see me and giving them ammunition to trash me more than they had before (I had already had it out with them over trashing my Irish culture and people across social media – anything more right now would’ve had me snap and become a viral YouTube video).
But I did it. Every day I’d force myself out of the house then out of the car and slowly walk up to the doors pushing that walker along. Eventually I got to trade out the ‘granny walker’ for a cane then by December the cane was gone and I was training for a 5K which I walked because I wasn’t up to running yet.
For my birthday in early January I went hiking up a mountain. As I sat there on the summit overlooking the beauty around me I realized choosing to live was EXACTLY that – a choice. Every day that I wake up, get out of bed, get ready for the day and do something with my life is MY choice.
Yes I’ve had a bad hand dealt to me across my life.
The medical community not only let me down but nearly destroyed my health and life in the process but it was MY choice to give up instead of pushing until I got help.
Yes I’ve had crappy people I should’t have trusted to be my friends but it was MY choice to slip into depression rather than say screw them and move on.
Yes I’ve had breathtakingly bad family members who made shockingly horrible decisions regarding my life and health but it was MY choice to listen to them, to give them power over those aspects and to believe in their negativity.
As I sat there relishing in the fact I went from being bedridden in the Summer of 2019 to a 5k in the Winter of 2019 and starting 2020 off by climbing a mountain I realized 2019 was also the year I chose to live.
My 2020 New Years Resolution? That’s easy. I’m going to keep climbing mountains; both the metaphorical and physical!
2 Comments Add yours
What can I say other than ‘Well done’ for choosing life. I was captivated reading this blog and so inspired that you had come through so much. May you be blessed in abundance as you walk through your life and I know you will be a blessing to others as well. Love Lois
That was very inspiring and insightful. Thank you for sharing.