Stages of Grief… A Rare Disease

After all these years.. So many years.. I’ve fought to be believed. I’ve fought for answers to what I believe is slowly killing me. Always blamed on my conditions that are not progressive, that don’t cause the symptoms that were bothering me most. Always told my blood looks good and there was nothing wrong with me. But my blood doesn’t always look good and yet they say otherwise.

I’ve been told I’m just overly anxious. I’ve been told I’m simply focusing on it too much and if I distract myself, I’ll feel better. I’ve been told it’s all in my head. Not even just by medical professionals, the people we’re supposed to trust and turn to for guidance, diagnoses, and direction but also by family of all people who should have my back the most. Being called a hypochondriac, always thinking I’m dying or I have this or that. Being told I’m faking. Being told I’m scamming the system. Having others talk about me behind my back instead of coming together to support and help me. That’s very damaging.

Now imagine going through that for so many years. So many years the damage that builds up inside. PTSD from seeking help and being cast aside. Questioning your own sanity and your own self asking if it’s truly possible I was simply imagining the torment my body is going through. You can not imagine the hell my mind was put through. You simply can not imagine… unless you too have been through it.

And then one day, 22 years later. #22 for those in the know. TWENTY TWO YEARS later I get some answers. It’s not in my head. It’s not fake. It’s not anxiety, somatic symptom disorder, being overly anxious, a hypochondriac, a scammer of the system, or attention seeker. I have a REAL DISEASE. Not only a real disease but a super rare disease. About 1 in 200,000 people. Not only a rare disease but a debilitating disease. Not only a debilitating disease but a fatal disease. I have a REAL disease. And it pains me even to say that knowing many suffer from fibro and ME/CFS just like I do but we are not treated like patients with a real disease or taken seriously when we’re falling apart and suffering in so much pain and disability. They are real too, likely a collection to explain a disease simply being underdiagnosed and ignored when basic labs are normal because doctors don’t know how to look beyond the narrow box in which they seek to fit everyone.

I find myself going through the stages of grief. You’d think I’d feel elated. Vindicated, justice at last but oddly enough, I find myself soaked in grief, in shock, anger and bitterness over all the time wasted. All the time being put through hell, being bashed, emotionally abused, and mistreated and allowed to progress so badly there is no coming back from this. My body is damaged. Had they simply listened when I first complained. Had they only helped me when I told them that exertion is making me more ill, that I needed help! Both medically and at home as I am dying and I feel it in every cell of my body but no help came. Because they didn’t believe. On top of that insurance and the VA rules are so contradictory and on paper offer so much of what people need but they dangle it on a string above our heads but simply out of reach of us.

And if I do ever finally get granted the funds I need to pay for the help I’ve been asking for, do you really think I’d turn around and pay those who’ve denied me the help I’ve been asking for all this time but never truly given it? Only to help when paid? I rather hire a stranger off the street. The pain is so deep. How do I ever recover from that? I want to look each person in the eye who ever denied me, gaslighted me, and blamed mental health and tell them how truly ignorant they are, how truly wrong they were. They are a danger to others if they ever think it’s ok to allow someone to suffer as much as I have suffered and not do their jobs and help me.

I’m still bouncing between shock, grief, and anger while I process the news I’ve been given. To validate the symptoms I’ve been battling for so long, the progression, the pain… I’ve been broken down mentally by the exhaustion of it all, to the point that simple stress causes paralysis and pain. Apparently, that’s a real thing with not only my disease but other diseases that affect the brain as well. So if I tell you that I don’t need the stress in my life, I don’t want to argue or waste my time on the stupid shit and you choose to continue it, you obviously do not care for my health and wellbeing. You are part of the problem. You are part of the progression of my disease.

If you truly cared, don’t you think you’d ask me questions about what I’m dealing with? Wouldn’t you want to know more about the disease I’ve been finally diagnosed with after twenty two years? Wouldn’t you be shocked with me that my disease can be fatal and my numbers cut short? Where is your compassion and concern? How about the fear of whether I’ve passed this down to my own children?! Something that literally paralyzes me and keeps me up at night as I wait this slow snails pace of a medical system to get my children tested so we know what our future holds. I’d take it all from them if I could.

How can I not feel the depths of despair and depression with everything I’m going through right now? That’s a tough pill for anyone to swallow. All I feel is loss. I don’t want to swallow this pill. I’m tired of pills. I’m just very tired.