Chronicles of Life with Multiple Sclerosis
Man, thank you all for your support. I can’t tell you how much your words helped me out. I’m on the road to letting the whole thing go and not taking it so personally. Having some crappy back pain and leg spasms serve as a fine reminder that regardless of what anyone says, the reality of my daily life is undeniable and telling me I’m fine doesn’t make these things go away.
My doctor says he measures his patients by their best days. I am not sure thats realistic when your worst days interfere with your life plans. The reality of having to change your whole life due to an illness is not something you can deny, or brush off. If anything, I think ignoring those horrible days trivializes the difficult life choices I’ve made and am in the process of making. I am processing these life changes, body changes, and the day to day unknown MS brings into my life. I cannot deny myself the grieving process that is the physical and financial loss of my former life. It IS a grieving process. I am financially and physically incapable of being the person I was 2 years ago, or before the 4 years prior to my MS of wrong diagnoses. I will, most likely, never finish my doctorate and never continue the career path that I had worked so hard for for 14 years. I spent everything I had paying for medical bills incurred during the diagnosis process because I had no insurance when this all began. Those are losses, and telling myself I’m fine and should be able to manage just the same just pushes back the process of acceptance that will get me to the place I need to be to find new life goals and a new “normal” (as one of you so perfectly puts it).
The decision to apply to SSI wasn’t one made lightly. It was one made out of desperation and in an attempt to accept that asking for help ok (something I’ve struggled with most of my life) and needed in order to get myself to a point where I can really process and move on to a life that isn’t dictated by this disease. This fact is what made those words my doctor said hurt the most. I felt like doing that was a positive step, a positive step towards taking back control, when he presented it as giving in. I know, in my heart, that it was anything but giving in. The application process was painful and gut wrenching but letting myself become homeless and leaving my MS un treated would probably have been a much less proactive action. I cannot let that fact, that knowledge, be taken away from me by words said by someone who does not have the whole picture and who does not live in my world.
As I said in a previous post, when I finally got accepted to SSI I thought I’d be free and clear to really move forward. I thought I would be happy and stable and able to decide what the new plan was if I was just able to get by somehow* . The reality, however, was that I had thrown myself into survival mode and the processing and grieving for the big picture I had for my life before didn’t really happen during that time. When I was able to feed myself, had a roof over my head, and health insurance, it all hit me hard. When I took that deep breath and looked around I really took in how much things had changed and would continue to change from then on. So from there I started to let myself deal with those bigger issues (all the while still dealing with the medication changes and stabilization). That was only 2.5 months ago. When I remind myself of that I think Its not so wrong that I might still be figuring things out and I might still be pretty depressed and anxious when faced with these changes.
The truth of all this is that it should take me as long as it takes me to grieve and process and feel my way through this. You don’t get used to waking up with different , new, or old symptoms every day. You don’t get over a the loss of a goal you had on a piece of paper when you were 10 and worked for from the moment you graduated high school (and in reality before that) in any set amount of time. Depression and anxiety are par for the course for all different reasons when it comes to MS and no one should tell anyone that they are giving in.
I do believe that we can lose sight of ourselves sometimes, and that maybe some motivation or tough love or whatever you want to call it can be helpful to some at sometime. I don’t, however, think its your doctors responsibility to judge your ability to cope. No one can tell you how to cope. It doesn’t work that way. And while I do think my doctor had some good intentions, he was coming from a place built on his own opinions and experiences ( I do believe he himself has MS). But like MS, no two people experience things the same way and there should be more care taken to trust your patients and listen to what they are saying without judging based on how they fit into the mold you have created for a model patient (or your own personal experience).
I think its inappropriate to tell someone that they are or are not disabled because of what you believe the psychological impact will have on them. Any good psychologist will tell you that labels, self set especially, can be carried in many different ways positive and negative. An outside party assigning a negative connotations to disability, or assuming that someone has self labeled by accessing resources, is pushing internalized stigmas onto someone that does not necessarily carry such feelings about themselves or the label. More over, deciding that experiencing and acknowledging depression and anxiety, with or without other illnesses involved, is “giving in” or “hindering yourself” can be exceptionally detrimental to an individuals healing process, their trust in their caretakers (which I assume doctors would like since they want you to tell them things or maybe thats where I went wrong.. post for later I think), and cause further distress that may not have occurred otherwise. Its not fair or right.
I preach a lot of these things here daily (anxiety and depression are not separate from the rest of our physiology & we should be treated well by our doctors, and our struggles are real and only we can decide what the best course of action for ourselves is) but I never seem to be quite as strong and inspired when faced with doctors appointments like the one I had monday. hah. Anyway, I’m going to take all the positive I can from the appointment and try and move on.
Thanks again everyone and thanks for reading. you all are the best :)
*don’t let this post fool you into thinking that SSI is a glorious thing. Its barely enough to live on and I struggle to pay the bills every month though hell if I am not grateful as hell for it.