Chronic illness: Have hope… but not too much of it

Migrelief - Outsmart Your Migraines

Hope is a great thing unless you are living for it. Then it is a very dangerous thing indeed. You want hope. Hopelessness is a horrible place to be. So hope is a very good thing to have. Just not to live on.

Have hope but not too much

Example of Too much hope with chronic pain

Back in the day when I worked full-time and struggled it get through the day inch by inch with unmanaged pain and depression, I was in a raw desperate state of existence. I was just crawling day by day to my neurologist appointment because I Hoped desperately and with all I had that he had something he could do for me. Anything. And I put All my hope in that as I struggled so damn hard every damn day.

I get to that appointment and that was the appointment where he admitted he had run out of ideas because I was not responding to medications or botox. He had no more ideas. And he was the best damn neurologist I had ever had. He sent me a referral for a clinic that would take about 2-3 years to get into.

And I got back into the car and I burst into tears. Because my hope crashed and burned and instantaneously turned into hopelessness and how the hell am I going to even survive like this? And mentally and emotionally… it was downward from there. Not his fault. I just had just hoped too much for something he could not give me. There was no real cure or answer for chronic migraines let alone someone who doesn’t respond to medications. But I was desperate so I latched onto him as my Only One hope. And that is was a very bad idea.

And now with hope and vertigo

I find myself wanting to do the same thing. Vestibular symptoms suck a lot and they impact your life a whole damn lot and in ways people just do not get. And it is exhausting beyond belief. Sometimes I rest all day and sleep most of it because I am drained from the dizziness and vertigo and I just cannot even function at all… with medication. Without medication it is hell and I cannot do a damn thing, at all, period. I feel horrible all the time. And I try to just do what I can, but everything has a major price to it that needs rest and recovery. Every small thing needs rest and recovery. Functionality is Low. Especially when you add in pain from FM and pain from chronic migraines. Who the hell would want to be Stuck like this? No one, that is who.

So I find myself Hoping the tests and the neurologist will have an Answer and a Diagnosis and a Treatment and things will get Better. And I find myself hoping just a little too much when I know it is complicated. I know he may not have a diagnosis. Or the diagnosis may be the vertigo will not go away and there is no treatment for it.

And if I Hope TOO much I will be destroyed by that. Crushed. So I find myself trying to reign myself back. And trying to be more realistic. Wait and see. I cannot know what the answers will be… if they have any answers at all. Or any treatment at all. Or any diagnosis at all. They may not. And if they diagnosis me there still may be no treatment. And I may have to deal with the fact this is my new normal. And if I accept this now then when I go I will not be destroyed by an answer I do not want.

In other words, with hope it is: Hope for the best, prepare for the worst

You can hope for a new treatment and that it will work great. There is nothing wrong with that optimism and, in fact, it is good to be optimistic about treatments psychologically because it can increase its effectiveness. Belief can affect treatment outcomes, as weird as that is. So be hopeful. But do not hope so desperately that that is ALL you Have. Such that when a treatment fails or a doctor runs out of ideas or you get a diagnosis you didn’t expect or want to deal with… you are destroyed by it. It is a horrible feeling. It broke me. At a time when mentally and emotionally I was not doing well at all.

So hope for the best outcome. Prepare for the worst mentally and emotionally so that you will not feel that crushing fall… instead, you will have already thought about it, dealt with it, developed a plan, maybe thought of alternative treatments already. You are prepared to move onto to other things to try and do. All your hope isn’t destroyed. It is just that one thing didn’t work out as you desired… and you have already figured out alternative plans or different ways to cope and adjust. You have already begun to adapt to the worst-case scenario.

So I have brought myself down from the Hope High back down to reasonable expectations. With a good amount of hope and a firm amount of understanding that this is a complex situation, I may not get the result I want on.

We have to acknowledge:

  • We do not have control over what is going to be said about a diagnosis, or not said. We have to wait.
  • We do not have control over whether a treatment fails or succeeds or moderate works but not to our expectations.
  • We have to have realistic ideas about outcomes of treatment
  • We have to have realistic expectations of appointments- specialists and doctors are not Gods or TV doctors… they are not going to cure us. And maybe it will take a lot of time to figure out the problem let alone do anything about it.
  • We have to be patient even though it does take so much time to wait for tests, wait for results, wait for specialist appointments and then the next one and then more tests… and it seems we are in limbo the entire time.

We have to have a balance. Not no hope. But not putting all our hope in one thing… dependant on that hope for our happiness because we are desperate. If we are living on a hope like that it generally means our treatment is severely lacking as is and we need to have some effective treatment for pain and maybe comorbid mental illness… because that is why we Put so my Hope on One thing… we have nothing left. So it is dangerous. Because when that hope fails us… we fall into hopelessness and despair. I am really cautioning myself to not live to much on hope for my upcoming October appointment that may just not help at all. Sometimes that is the way it goes. But neither do we want to think the worst in all things… like ‘life if a suckfest forever and ever and ever and nothing will ever make it better’ because that is catastrophizing and yeah it is a skill of mine… one I try to keep control of because it doesn’t do a mind any good at all.

See more:

Chronic illness, mood, and life satisfaction

Chronic pain: Catastrophizing

The story we tell ourselves
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4 comments

  1. This is so true, and something I’ve had to learn the hard way, too. For years I kept searching for answers for tummy issues, and it was beyond devastating to time and time again be let down. Hope just made things worse, especially because after my first surgery things went so ridiculously downhill. Now it feels like a different kind of hope. Less precise, less hinged on answers and improvement, and more just general hope for brighter days. That said, I’m still going to cross my fingers and keep hope alive for you and upcoming appointments. But I definitely think you’ve nailed this – “Because when that hope fails us… we fall into hopelessness and despair.” That kind of despair is hard to crawl back out from time and time again.
    Caz xxxx

    Liked by 1 person

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