Hope and Facing Reality

One of the positives that has come out of having a chronic illness is the number of amazing people I’ve met through networking with other ill individuals. I’ve learned so many things from the sick community! One of these things is that people have different ways of facing up to the reality of being ill. You’d think we would all follow a similar process. Something like: get ill, experience denial, get angry, grieve, then finally accept the reality of being ill for the rest of our lives. But this isn’t always the case.

Let me explain by telling you a bit about my journey towards acceptance. When I finally learned of my diagnosis and my doctor told me there wasn’t anything he could do besides try to manage the symptoms, I refused to accept his answer. I turned to the internet for answers. Countless hours were spent reading about the illness and various treatment options. When an option sounded like it might actually work, I tried it, but nothing helped. In fact, the mere effort required to implement new treatment options often caused me to deteriorate much more quickly. Eventually I had to admit there was no cure currently available for my condition.

At this point, you’d think I would have accepted this reality and focused on minimizing symptoms. But I wasn’t ready for that. Instead, I decided since nobody else had found a cure, I would be the one to find it. I spent countless more hours learning everything I could about how the body is supposed to work, how and why it malfunctions in people with ME, and what research had been done into these issues, both in ME patients and in other illnesses which share similar symptoms. I was determined to find a cure, if it was the last thing I did. During this time, I reflected back on that classic, inspiring movie, Lorenzo’s Oil, which I’d watched as a teen in high school. I even re-watched it several times (if you haven’t seen it, you’re missing out!). I figured if Lorenzo’s parents could find a cure for their son when medicine couldn’t, I could do the same for myself and others with ME. What I didn’t factor into the equation is just how much mental exertion exacerbates the symptoms of ME. In a cruel display of irony, the very illness I wanted to cure would itself make the fulfillment of that desire impossible.

Eventually (many crashes later), I had no choice but to give up on finding a cure myself. I did, however, learn a lot during my study of this illness, and I continue to learn what I can to this day. One thing I learned is that even the most hopeful researchers believe we are a few generations away from being able to fix the type of damage ME patients experience to their brain and Central Nervous System in general. Since that is the primary factor behind ME’s ongoing symptoms, it really wouldn’t matter if I had all the energy in the world. Science just isn’t ready. Technology isn’t close enough to realistically hope for a cure in my lifetime.

Yet often in the ME community, I run across people who are determined to believe a cure will happen in their lifetime. Are these people wrong to cling to hope? By no means! I myself clung to it for the longest time, but as someone far wiser than me once said, “hope deferred makes the heart sick.” Eventually, all of the knowledge and research I’d done began tugging at my consciousness, and for my own mental health, I had to face the facts head on and accept that for me, a cure is unlikely. There’s simply been too much damage done to my system. I’ve been strongly criticized when sharing these facts by people who saw me as trying to steal hope from others. On the other side of that coin, I’ve seen those who hope against all odds criticized as being unrealistic or uninformed. Neither criticism is okay in my book.

People deal with chronic illness in different ways. We go through different stages. Just because my journey towards acceptance took the path that it did doesn’t mean everyone else has to follow the same path. As a community, we need to respect each other’s individual needs. Some people need to think ahead and plan as realistically as possible for the future. Being told they shouldn’t be thinking about that stuff yet doesn’t help. Let them think! Let them plan! Let them process things the way they need to. Often it is necessary to grieve for something you know is coming before it happens. This is normal and perfectly okay. On the other hand, no one should attempt to force someone to give up hope. That hope may be all that’s getting someone through today. Remember, none of us can see the future. Miracles do happen. Huge scientific breakthroughs can occur unexpectedly. If people choose to place their hope in these things, even against all odds, that’s perfectly okay too! As mentioned above, there was a time when I needed to believe there could be a cure in my lifetime. It would have been incredibly cruel for someone to try to take that from me during that time. Just like it is cruel to accuse others of “giving up hope” when they make the difficult choice to face up to what they’ve learned and try to accept it rather than hold onto hope. In some ways I envy those who are able to keep hold of hope against all odds. It’s not easy when “the odds” are nagging at your consciousness all the time. That said, I’m content with where I’m at. It hasn’t been an easy journey getting to this current place of acceptance, and I still grieve and mourn at times, still keep an eye on current research, still wish sometimes there could be a cure in the next few months. But for the most part, I am accepting of the things I cannot change, and content to do the things my illness still allows.

A quick aside here: while I’m a firm believer that each person must face reality in their own way, I also believe we must be careful not to allow pressure from well meaning family and friends get in the way of being true to our own needs. In most cases, loved ones do not want to hear that there’s no cure. They definitely don’t want to hear that there most likely won’t be a cure in our lifetime. When the time came to break the news to my loved ones that my ME was literally killing me, it was a difficult thing to do. Many people still believe that the very belief that you won’t get well will keep you from ever doing so. This isn’t true, and goes back to a form of “miraculous thinking” typically seen in children (i.e. the belief that words or thoughts have more power than they actually do). If something happened and by some miracle I had a chance to get better, you’d better believe I’d take it! My acceptance of the facts in my current situation would in no way hinder me from getting better were the option available. So while you don’t have to wave difficult facts in loved ones’ faces, you also shouldn’t let them pressure you into ignoring what your heart knows is true and your mind needs to believe. Stay true to your own needs, whatever they may be in the area of processing and acceptance. You owe yourself that much.

Different people face reality in different ways. Those of us in the chronic illness community have enough on our plates to deal with without facing criticism from each other for how we choose to cope. Let’s be supportive of each other, including the route each individual takes on the journey of accepting all that our illness means. Let those who hope, hope. Let those who take a different view do that as well. Let’s simply love and accept each other, no matter what. After all, we’re all in this together.

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6 thoughts on “Hope and Facing Reality

  1. Thank you for this. My initial doctors advice and incorrect diagnosis, along with my inability to accept the reality of M.E. greatly contributed to it worsening.

    For years, every time I felt a little better I’d think, “I’m well.”

    I’d push through with the help of adrenaline rushes, unaware it was the adrenaline–not recovery and I was hurting myself more. I stayed in this crazy cycle way too long.

    I did this mainly for others. Thank you for reminding us to “Stay true to your own needs, whatever they may be in the area of processing and acceptance. You owe yourself that much.” I would also add stay true to your own need for rest.

    God bless you for the time and effort you put into sharing, encouraging, and educating. I understand what it takes from you.

    Best, Tami

    • Hi Tami – Very wise words. I, too, pushed myself far too hard for far too long. Most of the time I did it for myself, because I was a huge multitasker and overachiever, but there were many, many times I pushed myself because of others’ expectations, doing damage to myself because I couldn’t/wouldn’t say no or admit to needing rest. It’s so very important that people with ME put their body’s needs first, because this particular illness just doesn’t allow the wiggle room others do. Thank you for taking the time to comment and point that out! Take care!

  2. Wise and tolerant words. As you say, everyone has their own way of coping with their illness. I like your explanation of ‘miraculous thinking’ – this is by far the most prevalent belief in our culture. People often express these thoughts, but rarely talk about the importance of acceptance. As you indicate, acceptance is not resignation. Perhaps a middle path of acceptance that ‘this is how it is for me now’ is healthy, but that doesn’t mean you wouldn’t jump at the chance of appropriate treatment if it presented itself. But as you say, everyone has their own way of dealing with their situation and the important thing is to support each other whatever approach is taken.

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