For several years now, I have advocated for my medical care to save my life both mentally and physically. I have suffered for years now with deep daily physical and mental pain with very little relief. Answers and meaningful treatment are hard to come by for many of us.
I have had many physical symptoms that are often moved through the medical system with testing, and eventually, I'm told "everything's fine" and then friends, relatives and medical providers say 'oh, that's great'. No, it's not great when you have unexplainable things like a random racing heart, sometimes severe upper right quadrant abdominal pain, severe daily bowel and stomach issues, severe chronic joint pain in several joints, unexplainable severe fatigue, progressive hand weakness and so much more. (and that's just some of the unexplainable stuff) When you don't know what it is, you can't treat it well and the feeling that elicits is devastating hopelessness. My significant cervical spine issues are one of the few issues that can be seen through testing, but surgery made things worse and now I'm left with no answers and adjacent disc disease from the fusion surgery.
(Side note: I have also received diagnoses from specialists that my primary doctor or my pain doctor sent me to, and then both of these doctors just ignore the diagnoses completely and don't address them even when I bring them up. )
So many times, I hear the phrase, 'get help, treatment is out there' in relation to the mental health system. This isn't true for many of us. The system is broken. Many of us have unbearable side effects with meds and it is SUPER hard to find a therapist that actually helps. And many therapists do not have the cultural competence to work with people with disabilities or chronic illnesses. To reach out for help and be met with complete misunderstanding and in some cases, incompetence, is one of the loneliest things I've ever been through.
I grow tired of the daily worry of long-term financial stability. (The Social Security system isn't built for people like me with chronic, hard-to-diagnose conditions. Will I get SSDI? I doubt it. Can I work? Not right now and I don't know when, if ever) It's been over one year since I applied for disability and doubt that I will find out anything positive anytime soon. Our Social Security system also makes it difficult to work while you wait(even a little bit). If they deny people because they can use a computer or watch TV, they most likely will deny anyone who tries to work.
I know that many people like me are living on the streets of America right now. I should be more grateful, but making comparisons has never helped, nor has gratitude.
I know I must not be the only one. I want to be able to work. It is not 'fun' to hang out at home knowing you cannot work or be productive. It's also pretty freaking lonely.
It is difficult fighting this battle that few understand with very few allies. I often don't want to talk to others about it because they grow sick of hearing this pain that is my daily life(and the fact that it doesn't get better). After years of trying so many treatments and providers, I have realized that physical and mental health providers often have little clue what I am going through with no clue how to help. Even the ones I have considered thoughtful and decent don't seem to want to delve further into certain things even when I ask. (like losing the use of my dominant hand.. they don't seem to want to look any further into that at all and keep completely ignore it when I bring it up because one test that was done turned up no answers)
And then, watching a close loved one go through the exact same struggle with our broken system is just too much to handle.
I go on for those I love and who love me and don't want to lose me in their life. And for the animals that depend on me.
In a society that values success stories and pulling oneself up by one's bootstraps, my story is not an 'inspiration'. Even folks with disabilities don't want to hear others complain about the difficulty of disability. The disability community talks of disability pride and more. But, sometimes, when the system is so woefully inadequate and throws up so many barriers, disability just sucks.
I know that thousands of people like me are out in the world fighting this same battle. Perhaps even more now that folks are experiencing long-term complications from COVID 19. If I had the energy, I would fight to change all of this, but that is why we are forgotten: many of us don't have the energy to keep fighting. Some end up homeless. Some end up dead. Many do fight and keep trying to change things and hopefully, someday we will change the system with our collective small efforts.
