Hope in a Downward Spiral

One of the challenges with chronic illness is that it is progressively degenerative. For some it’s a very slow progression, and for others it’s very fast. Symptoms may increase and then decrease in the earlier stage of MS (called Relapsing/Remitting), but eventually it becomes progressively worse. Most of us do all we can to battle it. It’s incredible how much of a fighter you discover you are when you are diagnosed with something like this. There are moments of despair (lots of them!), but also many more moments of fighting, trying, researching, and hoping. We keep marching on with determination.

No, she didn’t, and doesn’t claim to have.

Many well-meaning friends and acquaintances offer words of encouragement, like: “If you exercise more, you will feel better and have more energy” (of course, they don’t understand that with chronic fatigue, the exact opposite is true), or: “I know someone who has MS, and she has found the best thing to do is just not think about it” (which is true when you aren’t battling symptoms that won’t let you forget), or: “Have you heard of Dr. Wahls? She cured her MS with diet and nutrition. You should try it!” (though for many of us, diet and nutrition only help so much, and are definitely not a cure). And of course, as anyone with chronic illness knows, most people will tell you how great you look. They mean it to be encouraging, but it often feels like they’re saying that you must be faking it.

All of those comments and responses are usually intended to encourage and to keep the conversation positive. We naturally want to fix things for each other. I too have made many suggestions to try and help people with their symptoms or illnesses for the exact same reason. It’s pretty great when you can actually make a suggestion that does help someone. Unfortunately, such comments very often miss the mark and do more harm than good.

Inspirational stories can feel like a kick in the face too sometimes. There are a lot of people who use social media as an outlet to promote positivity with all kinds of upbeat comments, food blog pics, and motivational graphics in their “MS Cure” groups. They tend to accumulate a massive number of page hits and fans, but I’ve often wondered if they are truly helping anyone. If you respond with anything less than total blind support and encouragement of every single thing they say, be prepared to be shut down and probably removed from the group or page. What’s worse, I’ve discovered that sometimes the people who start these pages are brand new to their disease and don’t have the experience behind them to do much good for others quite yet. It is a part of how they are learning to cope with their disease. I understand that. But there is danger in these kinds of groups because they often lend false hope, which will lead to a crash and depression when it’s finally understood as such. And it’s got to be terribly embarrassing for the individuals who actually do all this “positivity” promotion when they also find their disease is progressing and what they were doing wasn’t actually helping them.

Thankfully, there are online communities where people really do honestly support one another and are allowed to talk about the darker side of things. It’s authentic. I think there is much more to be gained there, and much more opportunity to give back as well. It can be bumpy at times, but that’s OK.

I have to admit that lately I’ve come to be more annoyed than inspired by all the “inspirational stories” that are floating around the Internet, the TV, and even often shared anecdotes in personal conversation. In the past I have usually gravitated towards them and appreciated them. Who doesn’t want to hear about people who have suffered some horrible physical ailment or accident and have clawed their way back to a place of victory over their circumstances? I don’t begrudge them their victory, and I do realize how powerful it is to share such a thing. I think we all need to see such inspiring stories from time to time to remind us we should never give up. But sometimes I find all they do is depress me because my story is so very different from that. It’s easy to forget that those kinds of stories are the exception, not the rule. Most stories are a lot more like mine than like those inspiring ones. But our stories don’t get published and shared because they are, well, average and uninspiring. Boring.

Recently I spoke with some individuals who have suffered from traumatic injuries and who are fighting their way back to a more functional lifestyle. Their stories are truly amazing and inspirational. One, in particular happened to suffer her injury at nearly the same time as someone else I knew. While the former has made an absolutely incredible recovery, the latter died six months later. This is the reality of life. We need to celebrate with those who recover, and grieve with those who suffer loss. If we focus exclusively on the positive, inspiring outcomes, it undermines the value and needs of the suffering. But they matter too and should not be ignored, no matter how tempted we may be to focus on the sunny side of life.

MS Brain Lesions

Personally I was surprised to find talking with these injury survivors very difficult because, even though they have suffered horrible tragedy (and they truly have), they are now moving in a positive direction of improvement and even some healing. They have goals to work towards. There is great hope and encouragement in that. Their brains were instantly severely injured, but the actual injuring is over and healing is ongoing. With MS, it’s basically the opposite. My brain is slowly and gradually being injured over time. I can’t stop it, I can’t cure it, and I can’t even know what it will do to me next. This may sound like a pity party, but I don’ think it is. It’s about trying to relate to people at these different places in our lives. I find myself at a loss as to how to do it properly. So I’m writing about it. Maybe there are others out there who can relate.

Needless to say, they didn’t want to talk to me much because, while we do have some things in common regarding symptoms and struggles, we’re going in opposite directions. They don’t need me bringing them down with any reminders of an illness like mine. Don’t get me wrong, I don’t like focusing on the depressing things, and do try to keep things positive for others when the subject is addressed. But in cases like this, my only real option is to not talk about me at all and completely focus on them. This is OK, and even good sometimes. But I only have so much energy for it. And quite frankly, it’s hard to be so alone and misunderstood most of the time. Very few people know how to be kind and supportive – positive, yet real with someone in this situation. I know it’s hard. I struggle to do the same with others sometimes.

An example of this is a recent discussion I had with a young woman who also suffered a severe debilitating trauma. Only, this trauma left her with a crippling condition that requires full time care and heavy medications just to get through each day. Her situation is not one of slow improvement, and in fact may even get worse as time goes on (I think we were able to relate a bit on that subject). Looking back at our conversations, I realized I too have trouble figuring out how to support her and be positive when there is nothing to be done to improve her situation. I have no suggestions for her, and can’t even carry on long conversations because she can’t read very much before her condition overwhelms her and she has to log off. So I do understand what a struggle it is.

What I want to know is how we can be real and positive at the same time. I’ve never cared for patronizing pep talks (you can tell I’m not a Joel Osteen fan, right?). If it isn’t true, and isn’t real, it isn’t actually going to help, and is best left unsaid. The real stuff is harder to produce. It’s raw, sometimes uncomfortable, and can require a lot of energy and thoughtfulness. Most of us don’t have a clue where to start.

I can’t help but think what a powerful ministry it would be if people who do know how to handle these situations well could teach the rest of us so that we can minister more effectively to one another. Wouldn’t that be something?

In the past several years I have done a LOT of research about my illness, possible causes, treatments, diets, etc, etc. As I mentioned earlier, there are thousands of blogs and websites dedicated to “curing” your MS or putting it into “remission”. Spending a lot of time reading them initially gave me a sense of empowerment and hope that I too might be able to keep this disease from totally destroying my quality of living. And after spending countless hours, borrowed energy, and far too much of my husband’s hard earned money, what I’m finally learning to accept is that I’m not in control of this thing. I admit I’m a bit of a control freak sometimes, so this is a hard thing to accept. But the Lord is using this struggle to show me clearly that I can’t just “give up control and trust Him” – The truth is that I never had the control to begin with. He decides how this thing will go. The key is trusting Him, who He is, what He has done, and all that He has promised. It is daily surrender. That is where my hope lies. This is His story, which He is working out through me and in my life. I need to keep pushing forward, keep making healthy choices and watching to see what treatments I might be able to try in the future. But ultimately none of that can or will help unless God designs for it to be so. And if He doesn’t, I know that He has other, better plans for me. He directs my path. And I am so thankful because there simply is no greater hope that that!

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